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STEVE FORD, EDITOR

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Diagnosis and management of COPD: a case study

04 May, 2020

This case study explains the symptoms, causes, pathophysiology, diagnosis and management of chronic obstructive pulmonary disease

This article uses a case study to discuss the symptoms, causes and management of chronic obstructive pulmonary disease, describing the patient’s associated pathophysiology. Diagnosis involves spirometry testing to measure the volume of air that can be exhaled; it is often performed after administering a short-acting beta-agonist. Management of chronic obstructive pulmonary disease involves lifestyle interventions – vaccinations, smoking cessation and pulmonary rehabilitation – pharmacological interventions and self-management.

Citation: Price D, Williams N (2020) Diagnosis and management of COPD: a case study. Nursing Times [online]; 116: 6, 36-38.

Authors: Debbie Price is lead practice nurse, Llandrindod Wells Medical Practice; Nikki Williams is associate professor of respiratory and sleep physiology, Swansea University.

• This article has been double-blind peer reviewed
• Scroll down to read the article or download a print-friendly PDF here (if the PDF fails to fully download please try again using a different browser)

Introduction

The term chronic obstructive pulmonary disease (COPD) is used to describe a number of conditions, including chronic bronchitis and emphysema. Although common, preventable and treatable, COPD was projected to become the third leading cause of death globally by 2020 (Lozano et al, 2012). In the UK in 2012, approximately 30,000 people died of COPD – 5.3% of the total number of deaths. By 2016, information published by the World Health Organization indicated that Lozano et al (2012)’s projection had already come true.

People with COPD experience persistent respiratory symptoms and airflow limitation that can be due to airway or alveolar abnormalities, caused by significant exposure to noxious particles or gases, commonly from tobacco smoking. The projected level of disease burden poses a major public-health challenge and primary care nurses can be pivotal in the early identification, assessment and management of COPD (Hooper et al, 2012).

Grace Parker (the patient’s name has been changed) attends a nurse-led COPD clinic for routine reviews. A widowed, 60-year-old, retired post office clerk, her main complaint is breathlessness after moderate exertion. She scored 3 on the modified Medical Research Council (mMRC) scale (Fletcher et al, 1959), indicating she is unable to walk more than 100 yards without stopping due to breathlessness. Ms Parker also has a cough that produces yellow sputum (particularly in the mornings) and an intermittent wheeze. Her symptoms have worsened over the last six months. She feels anxious leaving the house alone because of her breathlessness and reduced exercise tolerance, and scored 26 on the COPD Assessment Test (CAT, catestonline.org), indicating a high level of impact.

Ms Parker smokes 10 cigarettes a day and has a pack-year score of 29. She has not experienced any haemoptysis (coughing up blood) or chest pain, and her weight is stable; a body mass index of 40kg/m 2 means she is classified as obese. She has had three exacerbations of COPD in the previous 12 months, each managed in the community with antibiotics, steroids and salbutamol.

Ms Parker was diagnosed with COPD five years ago. Using Epstein et al’s (2008) guidelines, a nurse took a history from her, which provided 80% of the information needed for a COPD diagnosis; it was then confirmed following spirometry testing as per National Institute for Health and Care Excellence (2018) guidance.

The nurse used the Calgary-Cambridge consultation model, as it combines the pathological description of COPD with the patient’s subjective experience of the illness (Silverman et al, 2013). Effective communication skills are essential in building a trusting therapeutic relationship, as the quality of the relationship between Ms Parker and the nurse will have a direct impact on the effectiveness of clinical outcomes (Fawcett and Rhynas, 2012).

In a national clinical audit report, Baxter et al (2016) identified inaccurate history taking and inadequately performed spirometry as important factors in the inaccurate diagnosis of COPD on general practice COPD registers; only 52.1% of patients included in the report had received quality-assured spirometry.

Pathophysiology of COPD

Knowing the pathophysiology of COPD allowed the nurse to recognise and understand the physical symptoms and provide effective care (Mitchell, 2015). Continued exposure to tobacco smoke is the likely cause of the damage to Ms Parker’s small airways, causing her cough and increased sputum production. She could also have chronic inflammation, resulting in airway smooth-muscle contraction, sluggish ciliary movement, hypertrophy and hyperplasia of mucus-secreting goblet cells, as well as release of inflammatory mediators (Mitchell, 2015).

Ms Parker may also have emphysema, which leads to damaged parenchyma (alveoli and structures involved in gas exchange) and loss of alveolar attachments (elastic connective fibres). This causes gas trapping, dynamic hyperinflation, decreased expiratory flow rates and airway collapse, particularly during expiration (Kaufman, 2013). Ms Parker also displayed pursed-lip breathing; this is a technique used to lengthen the expiratory time and improve gaseous exchange, and is a sign of dynamic hyperinflation (Douglas et al, 2013).

In a healthy lung, the destruction and repair of alveolar tissue depends on proteases and antiproteases, mainly released by neutrophils and macrophages. Inhaling cigarette smoke disrupts the usually delicately balanced activity of these enzymes, resulting in the parenchymal damage and small airways (with a lumen of <2mm in diameter) airways disease that is characteristic of emphysema. The severity of parenchymal damage or small airways disease varies, with no pattern related to disease progression (Global Initiative for Chronic Obstructive Lung Disease, 2018).

Ms Parker also had a wheeze, heard through a stethoscope as a continuous whistling sound, which arises from turbulent airflow through constricted airway smooth muscle, a process noted by Mitchell (2015). The wheeze, her 29 pack-year score, exertional breathlessness, cough, sputum production and tiredness, and the findings from her physical examination, were consistent with a diagnosis of COPD (GOLD, 2018; NICE, 2018).

Spirometry is a tool used to identify airflow obstruction but does not identify the cause. Commonly measured parameters are:

• Forced expiratory volume – the volume of air that can be exhaled – in one second (FEV1), starting from a maximal inspiration (in litres);
• Forced vital capacity (FVC) – the total volume of air that can be forcibly exhaled – at timed intervals, starting from a maximal inspiration (in litres).

Calculating the FEV1 as a percentage of the FVC gives the forced expiratory ratio (FEV1/FVC). This provides an index of airflow obstruction; the lower the ratio, the greater the degree of obstruction. In the absence of respiratory disease, FEV1 should be ≥70% of FVC. An FEV1/FVC of <70% is commonly used to denote airflow obstruction (Moore, 2012).

As they are time dependent, FEV1 and FEV1/FVC are reduced in diseases that cause airways to narrow and expiration to slow. FVC, however, is not time dependent: with enough expiratory time, a person can usually exhale to their full FVC. Lung function parameters vary depending on age, height, gender and ethnicity, so the degree of FEV1 and FVC impairment is calculated by comparing a person’s recorded values with predicted values. A recorded value of >80% of the predicted value has been considered ‘normal’ for spirometry parameters but the lower limit of normal – equal to the fifth percentile of a healthy, non-smoking population – based on more robust statistical models is increasingly being used (Cooper et al, 2017).

A reversibility test involves performing spirometry before and after administering a short-acting beta-agonist (SABA) such as salbutamol; the test is used to distinguish between reversible and fixed airflow obstruction. For symptomatic asthma, airflow obstruction due to airway smooth-muscle contraction is reversible: administering a SABA results in smooth-muscle relaxation and improved airflow (Lumb, 2016). However, COPD is associated with fixed airflow obstruction, resulting from neutrophil-driven inflammatory changes, excess mucus secretion and disrupted alveolar attachments, as opposed to airway smooth-muscle contraction.

Administering a SABA for COPD does not usually produce bronchodilation to the extent seen in someone with asthma: a person with asthma may demonstrate significant improvement in FEV1 (of >400ml) after having a SABA, but this may not change in someone with COPD (NICE, 2018). However, a negative response does not rule out therapeutic benefit from long-term SABA use (Marín et al, 2014).

NICE (2018) and GOLD (2018) guidelines advocate performing spirometry after administering a bronchodilator to diagnose COPD. Both suggest a FEV1/FVC of <70% in a person with respiratory symptoms supports a diagnosis of COPD, and both grade the severity of the condition using the predicted FEV1. Ms Parker’s spirometry results showed an FEV1/FVC of 56% and a predicted FEV1 of 57%, with no significant improvement in these values with a reversibility test.

GOLD (2018) guidance is widely accepted and used internationally. However, it was developed by medical practitioners with a medicalised approach, so there is potential for a bias towards pharmacological management of COPD. NICE (2018) guidance may be more useful for practice nurses, as it was developed by a multidisciplinary team using evidence from systematic reviews or meta-analyses of randomised controlled trials, providing a holistic approach. NICE guidance may be outdated on publication, but regular reviews are performed and published online.

NHS England (2016) holds a national register of all health professionals certified in spirometry. It was set up to raise spirometry standards across the country.

Assessment and management

The goals of assessing and managing Ms Parker’s COPD are to:

• Review and determine the level of airflow obstruction;
• Assess the disease’s impact on her life;
• Risk assess future disease progression and exacerbations;
• Recommend pharmacological and therapeutic management.

GOLD’s (2018) ABCD assessment tool (Fig 1) grades COPD severity using spirometry results, number of exacerbations, CAT score and mMRC score, and can be used to support evidence-based pharmacological management of COPD.

When Ms Parker was diagnosed, her predicted FEV1 of 57% categorised her as GOLD grade 2, and her mMRC score, CAT score and exacerbation history placed her in group D. The mMRC scale only measures breathlessness, but the CAT also assesses the impact COPD has on her life, meaning consecutive CAT scores can be compared, providing valuable information for follow-up and management (Zhao, et al, 2014).

After assessing the level of disease burden,  Ms Parker was then provided with education for self-management and lifestyle interventions.

Lifestyle interventions

Smoking cessation.

Cessation of smoking alongside support and pharmacotherapy is the second-most cost-effective intervention for COPD, when compared with most other pharmacological interventions (BTS and PCRS UK, 2012). Smoking cessation:

• Slows the progression of COPD;
• Improves lung function;
• Improves survival rates;
• Reduces the risk of lung cancer;
• Reduces the risk of coronary heart disease risk (Qureshi et al, 2014).

Ms Parker accepted a referral to an All Wales Smoking Cessation Service adviser based at her GP surgery. The adviser used the internationally accepted ‘five As’ approach:

• Ask – record the number of cigarettes the individual smokes per day or week, and the year they started smoking;
• Advise – urge them to quit. Advice should be clear and personalised;
• Assess – determine their willingness and confidence to attempt to quit. Note the state of change;
• Assist – help them to quit. Provide behavioural support and recommend or prescribe pharmacological aids. If they are not ready to quit, promote motivation for a future attempt;
• Arrange – book a follow-up appointment within one week or, if appropriate, refer them to a specialist cessation service for intensive support. Document the intervention.

NICE (2013) guidance recommends that this be used at every opportunity. Stead et al (2016) suggested that a combination of counselling and pharmacotherapy have proven to be the most effective strategy.

Pulmonary rehabilitation

Ms Parker’s positive response to smoking cessation provided an ideal opportunity to offer her pulmonary rehabilitation (PR)  – as indicated by Johnson et al (2014), changing one behaviour significantly increases a person’s chance of changing another.

PR – a supervised programme including exercise training, health education and breathing techniques – is an evidence-based, comprehensive, multidisciplinary intervention that:

• Improves exercise tolerance;
• Reduces dyspnoea;
• Promotes weight loss (Bolton et al, 2013).

These improvements often lead to an improved quality of life (Sciriha et al, 2015).

Most relevant for Ms Parker, PR has been shown to reduce anxiety and depression, which are linked to an increased risk of exacerbations and poorer health status (Miller and Davenport, 2015). People most at risk of future exacerbations are those who already experience them (Agusti et al, 2010), as in Ms Parker’s case. Patients who have frequent exacerbations have a lower quality of life, quicker progression of disease, reduced mobility and more-rapid decline in lung function than those who do not (Donaldson et al, 2002).

“COPD is a major public-health challenge; nurses can be pivotal in early identification, assessment and management”

Pharmacological interventions

Ms Parker has been prescribed inhaled salbutamol as required; this is a SABA that mediates the increase of cyclic adenosine monophosphate in airway smooth-muscle cells, leading to muscle relaxation and bronchodilation. SABAs facilitate lung emptying by dilatating the small airways, reversing dynamic hyperinflation of the lungs (Thomas et al, 2013). Ms Parker also uses a long-acting muscarinic antagonist (LAMA) inhaler, which works by blocking the bronchoconstrictor effects of acetylcholine on M3 muscarinic receptors in airway smooth muscle; release of acetylcholine by the parasympathetic nerves in the airways results in increased airway tone with reduced diameter.

At a routine review, Ms Parker admitted to only using the SABA and LAMA inhalers, despite also being prescribed a combined inhaled corticosteroid and long-acting beta 2 -agonist (ICS/LABA) inhaler. She was unaware that ICS/LABA inhalers are preferred over SABA inhalers, as they:

• Last for 12 hours;
• Improve the symptoms of breathlessness;
• Increase exercise tolerance;
• Can reduce the frequency of exacerbations (Agusti et al, 2010).

However, moderate-quality evidence shows that ICS/LABA combinations, particularly fluticasone, cause an increased risk of pneumonia (Suissa et al, 2013; Nannini et al, 2007). Inhaler choice should, therefore, be individualised, based on symptoms, delivery technique, patient education and compliance.

It is essential to teach and assess inhaler technique at every review (NICE, 2011). Ms Parker uses both a metered-dose inhaler and a dry-powder inhaler; an in-check device is used to assess her inspiratory effort, as different inhaler types require different inhalation speeds. Braido et al (2016) estimated that 50% of patients have poor inhaler technique, which may be due to health professionals lacking the confidence and capability to teach and assess their use.

Patients may also not have the dexterity, capacity to learn or vision required to use the inhaler. Online resources are available from, for example, RightBreathe (rightbreathe.com), British Lung Foundation (blf.org.uk). Ms Parker’s adherence could be improved through once-daily inhalers, as indicated by results from a study by Lipson et al (2017). Any change in her inhaler would be monitored as per local policy.

Vaccinations

Ms Parker keeps up to date with her seasonal influenza and pneumococcus vaccinations. This is in line with the low-cost, highest-benefit strategy identified by the British Thoracic Society and Primary Care Respiratory Society UK’s (2012) study, which was conducted to inform interventions for patients with COPD and their relative quality-adjusted life years. Influenza vaccinations have been shown to decrease the risk of lower respiratory tract infections and concurrent COPD exacerbations (Walters et al, 2017; Department of Health, 2011; Poole et al, 2006).

Self-management

Ms Parker was given a self-management plan that included:

• Information on how to monitor her symptoms;
• A rescue pack of antibiotics, steroids and salbutamol;
• A traffic-light system demonstrating when, and how, to commence treatment or seek medical help.

Self-management plans and rescue packs have been shown to reduce symptoms of an exacerbation (Baxter et al, 2016), allowing patients to be cared for in the community rather than in a hospital setting and increasing patient satisfaction (Fletcher and Dahl, 2013).

Improving Ms Parker’s adherence to once-daily inhalers and supporting her to self-manage and make the necessary lifestyle changes, should improve her symptoms and result in fewer exacerbations.

The earlier a diagnosis of COPD is made, the greater the chances of reducing lung damage through interventions such as smoking cessation, lifestyle modifications and treatment, if required (Price et al, 2011).

• Chronic obstructive pulmonary disease is a progressive respiratory condition, projected to become the third leading cause of death globally
• Diagnosis involves taking a patient history and performing spirometry testing
• Spirometry identifies airflow obstruction by measuring the volume of air that can be exhaled
• Chronic obstructive pulmonary disease is managed with lifestyle and pharmacological interventions, as well as self-management

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A COPD Case Study: Jim B.

This post was written by Jane Martin, BA, LRT, CRT, Assistant Director of Education at the COPD Foundation .

We're interested in your thoughts on our latest COPD case study: Jim B., a 68-year-old man here for his Phase II Pulmonary Rehabilitation intake interview.

A bit more about Jim:

Medical history: COPD, FEV1 six weeks ago was 38% of normal predicted, recent CXR shows flattened diaphragm with increased AP diameter, appendectomy age 34, broken nose and broken right arm as a child.

Labs: Lytes plus and CBC all within normal limits.

Physical exam: Breath sounds markedly diminished bilaterally with crackles right lower lobe and wheeze left upper lobe. Visible use of accessory muscles. O2 Saturation 93% room air, 95% O2 on 2lpm. Respiratory rate 24 and shallow, HR 94, BP 150/88, 1+ pitting pedal edema.

Current Medications: Prednisone 10mg q day / DuoNeb q 4 hrs. / Ibuprofen 400mg BID / Tums prn (estimates he takes two per day).

Respiratory history: 80-pack-year cigarette history, quit last year. He has developed a dry, hacking, non-productive cough over the last six months. Had asthma as a child and was exposed to second-hand smoke and cooking fumes while working at family-owned restaurant as a child. Lately, he has noticed slight chest tightness and increased cough when visiting his wife’s art studio.

Family history: Father had emphysema, died at age 69, mother died of breast cancer at 62. Grandfather died at age 57, grandmother died in her 40s of suicide. Six adult children, alive and well.

Previous respiratory admissions: Inpatient admission for six days last winter for acute exacerbation of COPD with bacterial pneumonia requiring 24-hour intubation and mechanical ventilation.

Psych: Jim presents to his Phase II Pulmonary Rehab intake interview appearing disheveled, wearing a sweatshirt, pajama pants and bedroom slippers. He is accompanied by his wife and adult daughter who appear neat, clean and well dressed. Patient states, “I don’t think you people can do anything to help me. I’m only here because they (referring to wife and daughter) made me go.” Jim states that he has been doing less and less at home since discharged from the hospital last winter. Wife states, “He walked outside a little with our grandchildren last Sunday and got so short of breath, he almost collapsed.” Became emotional when saying, “It scared the kids. It tore me up for them to see me that way. Besides that, with this darn shoulder I can’t even pick up the little ones anymore.”

Social: Lives at home with his wife of 43 years who works as an artist. Two out of his six children live within 30 miles of Jim’s home.

Occupation: Building contractor, retired three years ago. Jim states, “I made a good living. All the kids were able to go to college. I was strong. I could work circles around anybody in my crew. And now look at me. I’m tied to that darn breathing machine (referring to nebulizer) and I might as well hang it up.” Wife states, “He used to have all kinds of energy. Now all he does is sit in his chair watching TV, eating potato chips and peanuts.”

Tell us your impressions!

• What co-morbidities should be explored?
• How would you change Jim’s medication regime?
• What psych/social recommendations would you make?
• What other medical disciplines should do a consult on this patient?
• This is a real case. What are your thoughts on what took place following Jim’s pulmonary rehab intake interview?

This page was reviewed on March 3, 2020 by the COPD Foundation Content Review and Evaluation Committee

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• Open access
• Published: 13 December 2023

The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD

• Nicola Scichilone 1 ,
• Andrew Whittamore 2 ,
• Chris White 3 ,
• Elena Nudo 4 ,
• Massimo Savella 4 &
• Marta Lombardini 4  

BMC Pulmonary Medicine volume  23 , Article number:  506 ( 2023 ) Cite this article

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Chronic obstructive pulmonary disease (COPD) is a common condition that causes irreversible airway obstruction. Fatigue and exertional dyspnoea, for example, have a detrimental impact on the patient’s daily life. Current research has revealed the need to empower the patient, which can result in not only educated and effective decision-making, but also a considerable improvement in patient satisfaction and treatment compliance.

The current study aimed to investigate the perspectives and requirements of people living with COPD to possibly explore new ways to manage their disease.

Adults with COPD from 8 European countries were interviewed by human factor experts to evaluate their disease journey through the gathering of information on the age, performance, length, and impact of diagnosis, symptoms progression, and family and friends' reactions. The assessment of present symptoms, services, and challenges was performed through a 90-min semi-structured interview. To identify possible unmet needs of participants, a generic thematic method was used to explore patterns, themes, linkages, and sequences within the data collected. Flow charts and diagrams were created to communicate the primary findings. Following analysis, the data was consolidated into cohesive insights and conversation themes relevant to determining the patient's unmet needs.

The 62, who voluntarily accepted to be interviewed, were patients (61% females, aged 32–70 years) with a COPD diagnosis for at least 6 months with stable symptoms of different severity. The main challenges expressed by the patients were the impact on their lifestyle, reduced physical activity, and issues with their mobility. About one-fourth had challenges with their symptoms or medication including difficulty in breathing. Beyond finding a cure for COPD was the primary goal for patients, their main needs were to receive adequate information on the disease and treatments, and to have adequate support to improve physical activity and mobility, helpful both for patients and their families.

Conclusions

These results could aid in the creation of new ideas and concepts to improve our patient’s quality of life, encouraging a holistic approach to people living with COPD and reinforcing the commitment to understanding their needs.

Peer Review reports

Introduction

Chronic obstructive pulmonary disease (COPD) is defined by irreversible airway obstruction linked with comorbidities or systemic effects  [ 1 ]. COPD is a worldwide epidemic that contributes significantly to healthcare expenses due to high morbidity and mortality rates [ 2 , 3 ]. The clinical assessment of fixed airflow limitation and symptoms such as coughing and wheezing determine a COPD diagnosis; nevertheless, COPD symptoms negatively impact the patient's daily activities and lifestyle [ 4 ]. Patients may encounter a variety of debilitating physical symptoms, resulting in functional loss and high degrees of psychosocial anguish [ 5 , 6 , 7 ].

Integrated approaches to disease assessment and management are required to better understand and address the burden of COPD symptoms from a patient's perspective [ 8 ].

According to a recent observational study, regardless of disease severity, more than half of COPD patients experienced symptoms during the whole 24-h day, and almost 80% of patients reported experiencing symptoms at least twice a day. Symptoms are linked to poor health, depression, anxiety, and poor sleep quality [ 9 , 10 ].

Patients with COPD and comorbidities remain particularly challenging to manage because in Europe there is, generally, no guidance at the national level except in the UK, Slovenia, and Germany [ 11 , 12 , 13 ]. In Nordic countries and France, the management of patients with COPD is mainly performed by general practitioners with an inadequate level of assistance [ 14 , 15 , 16 ]. In other countries, patient management is performed at the discretion of the local structures, and the need for a comprehensive, holistic approach is looked forward [ 17 , 18 , 19 , 20 ]. Other chronic conditions increase symptom load, impair functional performance, and negatively impact health status; thus, management strategies must be adjusted accordingly [ 10 ].

Care plans, within the healthcare system, emphasize the importance of addressing these patients' particular physical, psychological, social, and spiritual needs through holistic supportive input offered as person-centered care [ 21 ]. Understanding the patient's perspective on their support requirements (those areas of living with COPD for which they require assistance, such as help controlling symptoms or accessing financial benefits) is critical to facilitating this approach. A recent systematic literature review has identified a whole range of support needs for COPD patients, based on the perspectives of the patients themselves [ 7 ].

Our human factor study aims to explore how COPD has affected the patients’ daily lives and the lives of those around them, through the assessment of symptoms, treatment, and service availability, identifying what challenges the patient faces in living with COPD, and which are the unmet needs in the different stages of the journey of care.

This human factors COPD patient needs study was conducted in November 2022 by an ISO 13485 certified specialist human factors consultant (Rebus Medical Ltd), both in-person or remotely, via video call using the Zoom platform. Remote interviews were needed to enable more severe patients to attend the sessions and to ensure that the intended study sample was achieved. As for other qualitative analyses, a minimum of 48 participants were planned to be interviewed.

Interviews were conducted on a 1–1 basis, with patients who voluntarily accepted to be interviewed from 8 countries: Denmark, France, Germany, Italy, Slovenia, Spain, Sweden, and the UK. Each interview was 90 min long and followed a semi-structured approach allowing for unscripted discussion when the participants’ responses raised new questions. For interviews that took place outside of the UK, a native-speaking moderator conducted the interview, whilst an interpreter translated the conversation live to a data analyst (Fig.  1 ).

Summary of the study methods. Countries involved in the study are indicated in grey

Participants included in the study, aged 18 years or older, with a current COPD diagnosis, were screened for COPD severity according to GOLD criteria-2020-document [ 22 ] and voluntarily provided their informed consent.

Because the objectives were connected to identifying unmet requirements through video conference, the formative interviews were deemed low to minimal risk to participants and, thus, no formal approval to an Ethical Committee was required.

For interviews conducted in a language other than English, a simultaneous translator was recruited to enable a member of Rebus Medical staff to watch the interview listen to the translation, and record notes. Digital video recordings were collected to accurately account for each test session. Notes were verified at the end of each interview, while participant faces recorded on the videos were blurred to anonymize the footage. When all interviews were complete, the raw notes from each interview were collated and verified using the recorded videos in a master data capture spreadsheet.

The interviews were conducted to evaluate the journey of care through the collection of information on the gender, age, performance, length, and impact of diagnosis, symptoms progression, and family and friends’ reactions through questions that were designed on purpose to identify the unmet need and main challenges of each step of the patient’s journey. The evaluation of the current symptoms (fluctuations, flare-ups, alleviations, effect on sleep and daily activities including the use of electronic devices), services (health care providers support, insurance, available information on COPD), and challenges (in lifestyle, daily activities, treatments, symptoms management, emotional and environmental) was included in the semi-structured interview (Table 1 ).

As this was an exploratory insight interview, protocol deviations like alterations to the interviewer’s script to reformulate questions, ad hoc addition of questions and probes to the interviewer’s script to focus on points of interest specific to each participant, and changes to the interviewer’s script as the study progresses to allow for study learnings were permitted and expected.

A generic thematic approach was employed to uncover patterns, themes, links, and sequences within the data collected to identify probable unmet needs of participants through the patient journey of people living with COPD.

To communicate the major findings, flow charts, and diagrams were constructed. Following analysis, the data were synthesized and refined into cohesive insights and discussion themes pertinent to identifying the patient's unmet needs along the different stages of the patient journey.

A total of 62 patients (38—61% females) with COPD aged between 32 and 70 years ( N  = 1 aged 25–40 years, N  = 42 aged 41–65 years, N  = 19 aged > 65 years) were interviewed. Most of the patients (35—56%) had severe COPD (Table 2 ).

Current- or past smokers were 49 (80%) of the 61 respondents. A larger proportion of patients with severe COPD (9/35, 26%) had never smoked compared to the moderate COPD patient group (3/27, 11%); in fact, 26 (74%) severe patients and 24 (89%) moderate were smokers or had smoked in the past (Fig.  2 ).

Distribution of patients that have ever been a smoker against COPD severity

Legend: n/a = not available

Patient journey

A total of 113 symptoms of COPD were recorded because most patients reported more than 1 symptom at the onset of the disease; 78 (69%) of these symptoms were related to dyspnoea. The highest reported symptoms were difficulty breathing and coughing (Fig.  3 ).

Patient’s reported signs and symptoms leading to COPD diagnosis

Note—Other includes chest tightness, hereditary respiratory issues, persistent flare ups, unable to walk upstairs, difficulty talking, difficulty walking, difficulty swallowing, bronchitis as a child and headaches

Fourteen (30%) of the 46 respondents referred to being diagnosed with COPD more than 1 year after initial symptoms, while 6 (13%) were diagnosed from 7 to 12 months from the onset of symptoms. Ten (64%) of the 14 requiring > 1 year for their diagnosis had severe COPD.

Most of the 56 patients who answered (41 – 73%) were diagnosed by a lung specialist mainly using spirometry (Fig.  4 ).

Tests performed at the visit of diagnosis

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom. “Other” includes: MRI, pressure cabin test, swabs collected, endoscope to check lungs, chamber, PET scan, Blood taken from the ear, blood gas test, oxygen saturation, walking/ running tests, echocardiogram, pulse oximeter/O 2 saturation, sleep test

About half of the responders (23 of 45 – 51%) felt their symptoms stable from the diagnosis (Fig.  5 ).

Symptom progression

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom, n/a = not available

Thirteen (29%) of those interviewed stated that their family and friends were supportive at the time of COPD diagnosis while 8 (18%) were worried about the diagnosis. Seven of them received no reaction from their family or friends and a further 7 did not tell anyone about their diagnosis. ‘Other’ reactions that were received from family and friends included: acceptance, anger, fear, shock, anguish, and expected, while some patients “prefer not to speak about it”.

The COPD diagnosis hurt 26 (58%) of the responders who described a negative impact of their COPD diagnosis, mainly because of their inability to be active, while 13 of them (29%) felt a positive impact mainly because they stopped or reduced smoking (Table 3 ).

Six (19%) of the 31 patients who provided details on the reason for quitting smoking reported they received more information about how to give up smoking and the risks associated with smoking, 3 patients mentioned some form of medication to support smoking cessation may have helped them give up, and 2 patients reported that they would give up for a family member but would struggle to have the motivation to do it themselves. Three patients reported that nothing would have helped them stop smoking while 8 patients reported that, despite knowing the impact smoking has, they still chose to smoke. Other suggestions to stop smoking reported by participants included: the threat of death, vaping if the smoking affected their fitness, cigarettes stopped being sold, stopping because of asthma and its diagnosis, quitting when they were in the hospital for a week giving it up after then, or because the smell was horrible.

A total of 59 patients answered about their changes in symptoms throughout the day; seventeen (29%) felt no changes while 13 (22%) worsened in the morning, 11 (19%) worsened at night, and 6 (10%) worsened both in the morning and at night.

Twenty-five (41%) of the 61 responders were hospitalized due to a COPD flare-up at least once after their COPD diagnosis; most of them had severe disease (Fig.  6 ).

Number of patients that have experienced a COPD flare-up by COPD severity

Seven (30%) of the 23 patients who took any action to alleviate their symptoms, before seeing a doctor and getting a diagnosis, reduced their physical exercise to not trigger symptoms. While others were more vigilant with their health, received help from family and friends, or used inhalers, a rescue pack, or menthol sweets.

Thirty seven out of 58 participants reported sleep disruption. Of these, 12 (32%), reported disruption due to COPD while 10 (17%) had sleep negatively affected by another condition. Other causes for patients’ sleep disruption included coughing, the need to change sleeping positions, and cold weather.

Patients reported needing more support including more information about their condition, financial support for transportation, improved treatment options, accessibility badges, and help in carrying out chores in the house such as cooking, cleaning, and general housekeeping. Some patients also indicated a wish for personal training. Some patients were unaware of what type of support they may require or what type of support could be available to them while others were looking for a different inhaler or treatment to alleviate their cough or a device that assists deep breathing, transplant, a dog or a sport requiring a limited physical effort that would help them be more active, and/or meeting a COPD support group.

About half of the respondents (26/56 – 46%) used electronic devices to monitor their health status including a finger pulse oximeter ( n  = 9), smartwatch ( n  = 8), or a blood pressure cuff ( n  = 5).

A total of 64 responses were collected from the 58 patients who shared their opinion on the treatment they were utilizing; 33 (52%) of the feedback was positive (Table 4 ).

While 20 (31%) of the respondents felt neutral about their current prescribed treatment, 11 (17%) reported either that their medicine had "no therapeutic impact", that they faced "psychological restraint" with their prescribed regime, or that they had issues with treatment compliance.

Six (12%) of the 52 respondents confirmed using digital or analogic reminders to take their dose. Three patients were currently using a dose counter on their device to remind them if their doses had not been taken, and two patients were using a timer on their mobile phones to remind them when their next dose was due. One participant used digital/analogic support but did not indicate which.

The main strategies used to remind them to take their medication include:

leaving the medication in a specific location to prompt them to take their dose at the correct time,

relying on habit or routine to prompt them to take their medication,

taking the COPD medication at the same time as other medications,

feeling unwell to prompt themselves to take their medication.

A total of 32 (56%) of the 57 respondents reported missing a medicine dose; eight of them cited a change in their schedule or routine as its cause. Other reasons for missing a dose reported by patients included: not taking the medication seriously, forgetting to take their dose in the evening, forgetting to bring their medication with them when leaving the house, a change in their environment, a missed medication delivery, and “not taking regular doses”.

The primary reasons why patients appreciate their present treatments were the drug's functionality ( n  = 18), the device design ( n  = 10), the convenience of use ( n  = 8), and the medication's quick and uncomplicated administration ( n  = 5). Other patients expressed liking for current medication including feeling comfortable with their present treatment, feeling in charge, and independence.

On the other hand, the device design ( n  = 14), the necessity to take their medication ( n  = 8), and the side effects of the drug ( n  = 5) were the most reported characteristics that patients disliked therapy. Other reported reasons included uncertainty about what the treatment is supposed to do, a sense of guilt when their medication is forgotten, the fact that they are still limited in their activity, and the sensation or taste inside their mouth. Three patients stated that they did not enjoy their current prescribed treatment. "You have to accept what is available," one patient said. Other patients referred detest having to take their medications daily.

About two-thirds ( n  = 34 – 67%) of those polled ( n  = 51) claimed no involvement with the selection of their present treatment option.

Most of the patients ( n  = 42 – 69% of the 61 respondents) reported receiving training for the use of their current treatment. The remaining 31% of the patients did not receive any training, reporting that they “would have liked more formal training, the current device is more complex”, or believed it “could have been useful to receive training and would have loved the explanation, demo training”. Three patients also stated that they did not need training, whether they received it or not.

Twenty-two (52%) of the 42 patients that received training, thought that it was effective and only 5 (12%) did not believe their training to be effective. Fifteen (36%) of patients who received training did not provide feedback on the efficacy of the training they received.

Eight Italian patients reported receiving instruction mostly from a lung specialist, while the majority of British ( n  = 5) and Nordic ( n  = 4) patients reported receiving training primarily from a nurse (Fig.  7 ); this is probably due to the different structures of the national health systems.

Health care provider (HCP) that administered training to patients by country

Legend: FR = France, GE = Germany, GP = General Practitioner; IT = Italy, SL = Slovenia, SP = Spain, n/a = not applicable; NO = Northern (Sweden Denmark), UK = United Kingdom

One Italian patient stated he received no specific training but was told by his pneumologist to look inside the package and read the instructions; a Frenchman mentioned that his wife was a doctor, so she just showed him how to use the device. Other participants’ training was received at meetings of a lung association from the pharmacists or at a live course organized by the doctor or during rehabilitation.

Six (18% of the 34 respondents) received help from their family or friends to find training materials or treatment information. Most patients received help to find further information and one participant mentioned that he was able to speak to a relative with COPD.

Six (15%) of the 41 respondents had gone online for help with their equipment (looking for tutorials online on forums and finding animated videos on how to use their inhalers). The main reasons for not using the internet for support were a lack of trust in online information ("would rather trust a doctor than go online"), an unwillingness to read more about their condition due to a fear of "reading too much" and becoming "depressed" if they investigated their disease. Other patients did not feel the need for additional support from the internet because their devices were "easy to use" or they wouldn't need further support due to their disease. One patient stated that he looked online and "found it strange that the messages were exclusively for persons with moderate to severe COPD, with only a few messages from people with mild COPD".

Lung specialists were the health care providers (HCPs) who most frequently provided support to patients with COPD ( n  = 24/60—40%) followed by general practitioners (23 – 38%) (Fig.  8 ); only 3 patients reported not having received any support.

Type of HCP support by country

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom

The most frequent answers to the question “If you had a magic wand what would you wish for to improve your life with COPD?” were to find a cure ( n  = 18), followed by more regular visits from their doctor/specialist ( n  = 11), stop smoking ( n  = 5), more information ( n  = 4), HCP contact number and COPD support group ( n  = 3), and digital monitoring ( n  = 2) (Fig.  9 ).

Improvements that patients wish to be made to improve their life by country

Other improvements that patients wish for include: access to new drugs, information about COPD, current and new drugs, reduced side effects, holding COPD workshops, investment in more research, provide cheaper treatment options, new lungs, something to help be more active, to be told that they would not need to take medication anymore, a new type of drug delivery that wouldn’t need to be taken with patient everywhere (like a nicotine patch), instant relief and doctors and nurses to be more humane.

Other services they felt were useful for them included physiotherapy ( n  = 12), the use of support groups ( n  = 8), exercise classes and psychological assistance ( n  = 6), nutrition ( n  = 4) while 1 patient from the UK suggested lifestyle (Fig.  10 ).

Other services the patient would like to use by country

Other services that patients would like to use included easier access to their HCP, paid, private physiotherapy sessions, smoking cessation support, disability card, training (videos and tutorials) including emergencies, lung transplants, more information about new drugs and the benefits of medication, hear more from doctors and pharmacists, and workshops for families and friends to help them understand what patients are going through.

Even if 3 patients reported having insurance covering additional services, they were generally unaware of the support they could receive through medical insurance. Many had concerns that such services would cost more money.

All the patients included in the study provided a total of 122 daily challenges they must face. 53 (43%) of the responses were related to their lifestyle. Reduced physical activity was referred by more than half ( n  = 32) of them and difficulty in mobility was reported by 16; 28 (23%) reported challenges with their symptoms or medication (mainly difficult breathing, n  = 15) (Fig.  11 ) while 13 (11%) reported emotional challenges including anxiety, depression, embarrassment due to symptoms or treatment, fear of the conditioning worsening, people recognizing they have a condition, acceptance of the condition and dependence on the medication.

Most reported challenges by COPD severity

The objective of this human factors research was to identify the unmet needs along the different stages of people living with COPD through a one-to-one, semi-structured interview exploring the patient’s feelings and attitudes toward their journeys with the disease.

Differently from other studies exploring similar aspects of the impact of the disease on patient’s daily life where the data belong to medical databases, [ 4 , 6 , 7 , 9 , 10 , 23 ] the current approach is unique, in that it systematically investigates the patient’s feelings in a structured fashion, thus allowing us to better understand the patient’s emotions, which is becoming a relevant aspect of COPD management [ 7 , 24 ]. Furthermore, because of the consistent and wide heterogeneity between the different countries, patients included in this study could have been considered representative of the entire population of European patients with COPD.

The patient reported feelings highlighted that reduced physical activity, mobility challenges, and difficulty breathing resulted as the main challenges in daily life. According to the current international guidelines on COPD management, [ 22 , 25 , 26 ] physical activity is encouraged and monitored to evaluate the prognosis or looked forward to as a target for the evaluation of the treatment efficacy. [ 25 ] Our results confirm that patients perceive COPD as the cause of their reduced physical activity, [ 27 ] having a strong impact on their self-perception. Differently from other studies where increased physical activity was observed independently from patients’ counseling, [ 28 ] general psychological support and accepting their mobility challenges were described as important aims by the patients. Our patients felt reduced mobility as one of their main challenges; aids to improve mobility were described in the available literature as crucial to maintaining the patient’s independence [ 7 ] and have been included in the 2023 GOLD guidelines [ 29 ].

The HCP approach is mainly focused on improving the patient’s breathlessness and exercise intolerance [ 22 , 25 ]; the feeling depicted by the interviewed patients confirms the lack of information about how to manage breathlessness. [ 30 ] The only positive aspect of the COPD diagnosis, reported by 6 of the interviewees, was smoke quitting. Patients frequently feel angry and depressed when they think about the difficulties they have described. Participants discussed a variety of coping mechanisms to deal with these difficulties, including cutting back on physical activity, making sure they stayed active (as much as possible), and utilizing their rescue inhaler as a preventative step.

About one-fourth of the patients did not report having performed spirometry at diagnosis; as spirometry is the landmark of diagnosis; any other method is not gold standard and subjected to criticism [ 22 ]. Because of the qualitative nature of this study, we cannot exclude that this issue was linked to the patient’s reduced memory at the time of diagnosis.

As observed in other studies, [ 31 ] negative behavior has a strong influence on the patient’s quality of life. Patients in the current study generally felt negative emotions before receiving their diagnosis; however, a supportive role of relatives and caregivers was referred by interviewed subjects at the time of diagnosis. About forty percent of patients complained of having waited long before the diagnosis. When asked about the impact of their current treatment, participants gave primarily positive feedback and commonly described their current therapy as “good” and doing its job. Even if most of the patients included in our study felt stable symptoms, some were still looking for a “miraculous” cure. The need for support beyond just pharmacological treatments, such as psychological support and physiotherapy, became clear through the in-depth discussions with patients, confirming the requirement for an integrated and patient-tailored interview to identify the profile of each patient [ 27 , 32 ] to share the most appropriate interventions in the periodic visits, without the need of the patient’s hospitalizations to allow the introduction of new therapies suggested by other research [ 33 ].

As expected, our results show that the information about COPD and the training on both the disease and treatment were provided by different HCPs in various European countries. However, patients often felt that they were not provided with enough information at the point of diagnosis regarding the condition itself or the range of treatment options available. Some felt they did not receive adequate training on how to take their medication correctly, whereas others highlighted that the public should be made more aware of the condition, in general, to help them feel accepted and understood by their family and friends. When asked about the current support they were receiving for their disease, patients reported wanting more information about their clinical condition or treatment options, more regular visits with their HCP, smoking cessation assistance, and support in their day-to-day lives such as housework and improved accessibility, confirming the need of self-management education and skills training highlighted by other authors [ 22 , 25 , 26 ]. However, many patients were unsure or unaware of what support/services were available to them or did not feel they needed any additional support.

This study had a qualitative approach and was, thus, not designed to provide any definitive answer to a study hypothesis. Differently from other studies on general populations of patients with COPD where males and elderly are the most frequent patients [ 34 , 35 ], those who agreed to participate in this study were mostly women and aged between 42 and 65 years. Due to the inclusion of patients that could not be fully representative of the global patients with COPD and the study approach, the outcomes have to be properly generalized. Furthermore, the nature of the study required interviews to be carried out in the participant’s local language with the use of translators to support analysis leading to a potential loss of nuance in meaning.

In conclusion, the current findings show that an apparent discrepancy exists between the traditional lung functional and pharmacological approaches in diagnosing and managing COPD and patient’s needs and challenges in daily activities. In this respect, human factor studies play a relevant role in intercepting gaps in the care of people suffering from COPD, encouraging a novel holistic approach when designing clinical research or shepherding patients along their COPD daily journey.

Availability of data and materials

The data that support the findings of this study are available from Chris White (Rebus Medical), but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are not available without permission of Chiesi Farmaceutici.

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Acknowledgements

Rebus Medical (St Nicholas House, 31-34 High St, Bristol BS1 2AW, United Kingdom) was responsible for contacting the patients, data collection, and statistical analyses. The authors thank Andrea Rossi for the medical writing support and the Chiesi and Rebus study team for the management of the Human factors study (Marta Lombardini, Ilaria Milesi, Lorenzo Ventura, Veronica Giminiani, Massimo Savella, Elena Zeni, Elena Nudo, Lisa Forde, Shivani Bhalsod, Elsie Barker, and Chris White).

The authors thank the patients, the interviewers, and the translators who made this study possible.

All the activities were funded by Chiesi Farmaceutici S.p.A. (Parma, Italy).

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Contributions

NS contributed to the design of the study and critically revised the outcomes according to the clinical needs from a specialistic point of view. AW contributed to the design of the study and critically revised the outcomes according to the clinical needs from a general practitioner’s point of view. CW designed the study, managed and coordinated the study activities. EN, MS, and ML contributed to the design of the study and critically revised the outcomes from a treatment producer’s point of view. All authors critically revised the drafted article and read and approved the final manuscript.

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The DL 20 marzo 2008 specifies that interviews to the patients without any clinical intervention (as the present study) are not considered observational studies and, thus, don't need to be submitted to the revision and approval of an Ethical committee.

All patients provided their informed consent to participate in this study. The informed consent included statements that required participants to agree to maintain confidentiality regarding the information shared during the study session, as well as described the conditions for the collection, use, processing, retention, and transfer of their personal data (including personally identifiable information and personal health information).

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Scichilone, N., Whittamore, A., White, C. et al. The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD. BMC Pulm Med 23 , 506 (2023). https://doi.org/10.1186/s12890-023-02796-8

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COPD Case Study: Patient Diagnosis and Treatment (2024)

by John Landry, BS, RRT | Updated: May 16, 2024

Chronic obstructive pulmonary disease (COPD) is a progressive lung disease that affects millions of people around the world. It is primarily caused by smoking and is characterized by a persistent obstruction of airflow that worsens over time.

COPD can lead to a range of symptoms, including coughing, wheezing, shortness of breath, and chest tightness, which can significantly impact a person’s quality of life.

This case study will review the diagnosis and treatment of an adult patient who presented with signs and symptoms of this condition.

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COPD Clinical Scenario

A 56-year-old male patient is in the ER with increased work of breathing. He felt mildly short of breath after waking this morning but became extremely dyspneic after climbing a few flights of stairs. He is even too short of breath to finish full sentences. His wife is present in the room and revealed that the patient has a history of liver failure, is allergic to penicillin, and has a 15-pack-year smoking history. She also stated that he builds cabinets for a living and is constantly required to work around a lot of fine dust and debris.

Physical Findings

On physical examination, the patient showed the following signs and symptoms:

• His pupils are equal and reactive to light.
• He is alert and oriented.
• He is breathing through pursed lips.
• His trachea is positioned in the midline, and no jugular venous distention is present.

Vital Signs

• Heart rate: 92 beats/min
• Respiratory rate: 22 breaths/min

Chest Assessment

• He has a larger-than-normal anterior-posterior chest diameter.
• He demonstrates bilateral chest expansion.
• He demonstrates a prolonged expiratory phase and diminished breath sounds during auscultation.
• He is showing signs of subcostal retractions.
• Chest palpation reveals no tactile fremitus.
• Chest percussion reveals increased resonance.
• His abdomen is soft and tender.
• No distention is present.

Extremities

• His capillary refill time is two seconds.
• Digital clubbing is present in his fingertips.
• There are no signs of pedal edema.
• His skin appears to have a yellow tint.

Lab and Radiology Results

• ABG results: pH 7.35 mmHg, PaCO2 59 mmHg, HCO3 30 mEq/L, and PaO2 64 mmHg.
• Chest x-ray: Flat diaphragm, increased retrosternal space, dark lung fields, slight hypertrophy of the right ventricle, and a narrow heart.
• Blood work: RBC 6.5 mill/m3, Hb 19 g/100 mL, and Hct 57%.

Based on the information given, the patient likely has chronic obstructive pulmonary disease (COPD) .

The key findings that point to this diagnosis include:

• Barrel chest
• A long expiratory time
• Diminished breath sounds
• Use of accessory muscles while breathing
• Digital clubbing
• Pursed lip breathing
• History of smoking
• Exposure to dust from work

What Findings are Relevant to the Patient’s COPD Diagnosis?

The patient’s chest x-ray showed classic signs of chronic COPD, which include hyperexpansion, dark lung fields, and a narrow heart.

This patient does not have a history of cor pulmonale ; however, the findings revealed hypertrophy of the right ventricle. This is something that should be further investigated as right-sided heart failure is common in patients with COPD.

The lab values that suggest the patient has COPD include increased RBC, Hct, and Hb levels, which are signs of chronic hypoxemia.

Furthermore, the patient’s ABG results indicate COPD is present because the interpretation reveals compensated respiratory acidosis with mild hypoxemia. Compensated blood gases indicate an issue that has been present for an extended period of time.

What Tests Could Further Support This Diagnosis?

A series of pulmonary function tests (PFT) would be useful for assessing the patient’s lung volumes and capacities. This would help confirm the diagnosis of COPD and inform you of the severity.

Note: COPD patients typically have an FEV1/FVC ratio of < 70%, with an FEV1 that is < 80%.

The initial treatment for this patient should involve the administration of low-flow oxygen to treat or prevent hypoxemia .

It’s acceptable to start with a nasal cannula at 1-2 L/min. However, it’s often recommended to use an air-entrainment mask on COPD patients in order to provide an exact FiO2.

Either way, you should start with the lowest possible FiO2 that can maintain adequate oxygenation and titrate based on the patient’s response.

Example: Let’s say you start the patient with an FiO2 of 28% via air-entrainment mask but increase it to 32% due to no improvement. The SpO2 originally was 84% but now has decreased to 80%, and his retractions are worsening. This patient is sitting in the tripod position and continues to demonstrate pursed-lip breathing. Another blood gas was collected, and the results show a PaCO2 of 65 mmHg and a PaO2 of 59 mmHg.

What Do You Recommend?

The patient has an increased work of breathing, and their condition is clearly getting worse. The latest ABG results confirmed this with an increased PaCO2 and a PaO2 that is decreasing.

This indicates that the patient needs further assistance with both ventilation and oxygenation .

Note: In general, mechanical ventilation should be avoided in patients with COPD (if possible) because they are often difficult to wean from the machine.

Therefore, at this time, the most appropriate treatment method is noninvasive ventilation (e.g., BiPAP).

Initial BiPAP Settings

In general, the most commonly recommended initial BiPAP settings for an adult patient include this following:

• IPAP: 8–12 cmH2O
• EPAP: 5–8 cmH2O
• Rate: 10–12 breaths/min
• FiO2: Whatever they were previously on

For example, let’s say you initiate BiPAP with an IPAP of 10 cmH20, an EPAP of 5 cmH2O, a rate of 12, and an FiO2 of 32% (since that is what he was previously getting).

After 30 minutes on the machine, the physician requested another ABG to be drawn, which revealed acute respiratory acidosis with mild hypoxemia.

What Adjustments to BiPAP Settings Would You Recommend?

The latest ABG results indicate that two parameters must be corrected:

• Increased PaCO2
• Decreased PaO2

You can address the PaO2 by increasing either the FiO2 or EPAP setting. EPAP functions as PEEP, which is effective in increasing oxygenation.

The PaCO2 can be lowered by increasing the IPAP setting. By doing so, it helps to increase the patient’s tidal volume, which increased their expired CO2.

Note: In general, when making adjustments to a patient’s BiPAP settings, it’s acceptable to increase the pressure in increments of 2 cmH2O and the FiO2 setting in 5% increments.

Oxygenation

To improve the patient’s oxygenation , you can increase the EPAP setting to 7 cmH2O. This would decrease the pressure support by 2 cmH2O because it’s essentially the difference between the IPAP and EPAP.

Therefore, if you increase the EPAP, you must also increase the IPAP by the same amount to maintain the same pressure support level.

Ventilation

However, this patient also has an increased PaCO2 , which means that you must increase the IPAP setting to blow off more CO2. Therefore, you can adjust the pressure settings on the machine as follows:

• IPAP: 14 cmH2O
• EPAP: 7 cmH2O

After making these changes and performing an assessment , you can see that the patient’s condition is improving.

Two days later, the patient has been successfully weaned off the BiPAP machine and no longer needs oxygen support. He is now ready to be discharged.

The doctor wants you to recommend home therapy and treatment modalities that could benefit this patient.

What Home Therapy Would You Recommend?

You can recommend home oxygen therapy if the patient’s PaO2 drops below 55 mmHg or their SpO2 drops below 88% more than twice in a three-week period.

Remember: You must use a conservative approach when administering oxygen to a patient with COPD.

Pharmacology

You may also consider the following pharmacological agents:

• Short-acting bronchodilators (e.g., Albuterol)
• Long-acting bronchodilators (e.g., Formoterol)
• Anticholinergic agents (e.g., Ipratropium bromide)
• Inhaled corticosteroids (e.g., Budesonide)
• Methylxanthine agents (e.g., Theophylline)

In addition, education on smoking cessation is also important for patients who smoke. Nicotine replacement therapy may also be indicated.

In some cases, bronchial hygiene therapy should be recommended to help with secretion clearance (e.g., positive expiratory pressure (PEP) therapy).

It’s also important to instruct the patient to stay active, maintain a healthy diet, avoid infections, and get an annual flu vaccine. Lastly, some COPD patients may benefit from cardiopulmonary rehabilitation .

By taking all of these factors into consideration, you can better manage this patient’s COPD and improve their quality of life.

Final Thoughts

There are two key points to remember when treating a patient with COPD. First, you must always be mindful of the amount of oxygen being delivered to keep the FiO2 as low as possible.

Second, you should use noninvasive ventilation, if possible, before performing intubation and conventional mechanical ventilation . Too much oxygen can knock out the patient’s drive to breathe, and once intubated, these patients can be difficult to wean from the ventilator .

Furthermore, once the patient is ready to be discharged, you must ensure that you are sending them home with the proper medications and home treatments to avoid readmission.

Written by:

John Landry is a registered respiratory therapist from Memphis, TN, and has a bachelor's degree in kinesiology. He enjoys using evidence-based research to help others breathe easier and live a healthier life.

• Faarc, Kacmarek Robert PhD Rrt, et al. Egan’s Fundamentals of Respiratory Care. 12th ed., Mosby, 2020.
• Chang, David. Clinical Application of Mechanical Ventilation . 4th ed., Cengage Learning, 2013.
• Rrt, Cairo J. PhD. Pilbeam’s Mechanical Ventilation: Physiological and Clinical Applications. 7th ed., Mosby, 2019.
• Faarc, Gardenhire Douglas EdD Rrt-Nps. Rau’s Respiratory Care Pharmacology. 10th ed., Mosby, 2019.
• Faarc, Heuer Al PhD Mba Rrt Rpft. Wilkins’ Clinical Assessment in Respiratory Care. 8th ed., Mosby, 2017.
• Rrt, Des Terry Jardins MEd, and Burton George Md Facp Fccp Faarc. Clinical Manifestations and Assessment of Respiratory Disease. 8th ed., Mosby, 2019.

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COPD Updates: What's New in Pathophysiology and Management?

Carlos Noujeim; Pierre Bou-Khalil

Expert Rev Resp Med. 2013;7(4):429-437. 

• Abstract and Introduction
• Pathophysiology & Airway Damage
• Lung Function Decline & Predictors
• The 'Frequent-exacerbation' Phenotype
• Definition of COPD Exacerbation & Its Clinical Impact
• GOLD Guidelines & Latest Stratification
• Antibiotics for Prevention of Exacerbations
• Expert Commentary
• Five-year View

In conclusion, COPD is a global disease, with increasing prevalence and health-related impact. The loss of FEV 1 may be slowing down, but what is really needed is an intervention that improves it in the long-term. It is important to identify patients with the frequent-exacerbation phenotype using clinical predictors such as chronic bronchitis, GERD and history of previous exacerbations. Performing a CT scan should not be done routinely, but can be useful in patients with severe disease. The findings may include bronchiectasis or an enlarged pulmonary artery, both clinically useful in identifying those at risk of recurrent exacerbations. COPD exacerbations are a major cause of mortality and morbidity, and it is important to recognize that they are inflammatory events primarily driven by infections, so antibiotic treatment according to a stratified approach is the right way to go as they are helpful in eradicating the bacteria and reducing the relapse rate. COPD is preventable, something that was always known, but physicians have to change our attitude in treating this disease. Relief of symptoms, reduction of exacerbations and improvement in quality of life should be our primary aim when approaching COPD patients. Out of the pipelines, tremendous ongoing research is being done to obtain new bronchodilators and anti-inflammatory therapies for COPD, with a lot of focus and promise in finding the magic bullet for this chronic and debilitating disease.

Expert Rev Resp Med. 2013;7(4):429-437. © 2013  Expert Reviews Ltd.

Authors and Disclosures

Carlos Noujeim* 1 and Pierre Bou-Khalil 2 1 Division of Pulmonary and Critical Care, Department of Internal Medicine, Tannourine Governmental Hospital, Batroun, Lebanon. 2 Division of Pulmonary and Critical Care, Department of Internal Medicine, American University of Beirut Medical Center, Beirut, Lebanon Financial & competing interests disclosure The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties. No writing assistance was utilized in the production of this manuscript. * Author for correspondence [email protected]

Airflow obstruction is mainly due to three mechanisms: emphysema, bronchiolitis, an inflammatory process and mucus plugging of the airways.

Inflammation causes fibrosis in the airways and loss of tissue adjacent to it.

Smoking hastens lung function decline and a complete cessation is essential for individuals to attain full benefit.

The subgroup of chronic obstructive pulmonary disease patients with two or more exacerbations annually is accordingly considered to have a frequent-exacerbation phenotype and should be targeted with an aggressive therapeutic approach.

Predictors for exacerbations are history of exacerbations, having a chronic bronchitis, a pulmonary artery over aortic diameter ratio above one, or bronchiectasis on chest imaging.

Exacerbations are detrimental and early interventions can minimize the incidences.

The new Global Initiative for Obstructive Pulmonary Disease guidelines have a multidimensional approach, relying on forced expiratory volume in 1 second and different symptomatic scores, as the Modified Medical Research Council Dyspnea scale and chronic obstructive pulmonary disease Assessment Test.

Physicians may consider using antibiotic prophylaxis in exacerbating patients who are already on optimal treatment, when the risk-to-benefit ratio is worth it.

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Managing a patient with copd and comorbidities: a case study, rachel lucy mitten community matron, peninsula community health community matron service, newquay hospital, newquay, cornwall, england.

This case study provides a critical analysis of the management of a patient with long-term conditions in a community matron service. Particular attention is given to the effect of chronic obstructive pulmonary disease (COPD). The effect of COPD on health and wellbeing, quality of life and hospital admissions is examined, and outcomes are detailed that resulted from the implementation of evidence-based interventions and a case management approach.

Nursing Standard . 30, 13, 46-51. doi: 10.7748/ns.30.13.46.s46

[email protected]

All articles are subject to external double-blind peer review and checked for plagiarism using automated software.

Received: 13 February 2015

Accepted: 29 May 2015

case study - chronic obstructive pulmonary disease - community matron service - comorbidities - complex care - COPD - long-term conditions

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25 November 2015 / Vol 30 issue 13

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Management of chronic obstructive pulmonary disease: A review focusing on exacerbations

Suzanne g bollmeier.

1 Division of Ambulatory Care Pharmacy, St. Louis College of Pharmacy, St. Louis, MO

Aaron P Hartmann

2 Department of Pharmacy, Barnes-Jewish Hospital, St. Louis, MO

Chronic obstructive pulmonary disease (COPD) is a significant cause of morbidity and mortality in the United States. Exacerbations— acute worsening of COPD symptoms—can be mild to severe in nature. Increased healthcare resource use is common among patients with frequent exacerbations, and exacerbations are a major cause of the high 30-day hospital readmission rates associated with COPD.

This review provides a concise overview of the literature regarding the impact of COPD exacerbations on both the patient and the healthcare system, the recommendations for pharmacologic management of COPD, and the strategies employed to improve patient care and reduce hospitalizations and readmissions. COPD exacerbations significantly impact patients’ health-related quality of life and disease progression; healthcare costs associated with severe exacerbation-related hospitalization range from $7,000 to $39,200. Timely and appropriate maintenance pharmacotherapy, particularly dual bronchodilators for maximizing bronchodilation, can significantly reduce exacerbations in patients with COPD. Additionally, multidisciplinary disease-management programs include pulmonary rehabilitation, follow-up appointments, aftercare, inhaler training, and patient education that can reduce hospitalizations and readmissions for patients with COPD.

Maximizing bronchodilation by the appropriate use of maintenance therapy, together with multidisciplinary disease-management and patient education programs, offers opportunities to reduce exacerbations, hospitalizations, and readmissions for patients with COPD.

• Frequent exacerbations in patients with chronic obstructive pulmonary disease (COPD) are a major cause of the high hospital readmission rates and can result in deteriorated patient health-related quality of life and accentuated healthcare costs.
• Appropriately administered maintenance pharmacotherapy can significantly reduce symptoms and prevent exacerbations in patients with COPD.
• Increased awareness of treatment recommendations among prescribers and COPD aftercare programs that provide patient support through education and inhaler technique training, in addition to pulmonary rehabilitation and follow-up appointments, also have been shown to improve patient outcomes and reduce hospitalizations.

Chronic obstructive pulmonary disease (COPD) is a preventable and treatable disease with airway obstruction and is characterized by persistent respiratory symptoms. 1 COPD is estimated to affect about 16 million adults in the United States. 2 Incidence of COPD is highest in patients who smoke or have a history of tobacco use, those older than 40 years, and men. 1 Despite recommendations that maintenance pharmacotherapy be used for patients with moderate-to-severe COPD, 1 up to 71% of patients from a Medicare population did not receive maintenance therapy, highlighting opportunities for improvements in patient management and care. 3

COPD is defined as being “stable” when symptoms are well managed and pulmonary decline is minimized, while management of “unstable” COPD (in patients who experience frequent or severe exacerbations and a faster decline in pulmonary function) can be more challenging. Exacerbations of COPD are a major contributor to the economic burden and, depending on severity, can result in the need for emergency department (ED) visits and hospitalizations. 4-7 Also, there is a positive correlation between disease severity and higher treatment costs. 1 The expansion of the Affordable Care Act Hospital Readmissions Reduction Program in 2014 to include COPD has highlighted the need for better management to reduce frequent hospitalizations and readmissions associated with severe disease. 8 This review provides an overview of the impact of COPD on patients and, more broadly, the impact on the health system overall, and reviews the latest management guidelines for patients with COPD. We discuss how appropriate treatment can improve patient outcomes and reduce healthcare use and associated costs.

Impact of exacerbations on patients

Increases in exacerbation frequency, severity, and length of recovery period have all been shown to significantly reduce health-related quality of life for patients with COPD. 9 , 10 In one prospective trial, the mean recovery time for symptoms to return to baseline levels following an exacerbation event was ~14.5 days, while the recovery of peak expiratory flow to patient baseline levels did not occur within 99 days for ~7% of exacerbations. 9 This suggests that lung function may undergo accelerated decline and may not fully recover following an exacerbation. Furthermore, recovery of lung function and symptoms to baseline levels following an exacerbation was found to occur more slowly with each additional year of disease, making it harder for patients to recover from exacerbations over time. 11 In two separate studies, frequent exacerbations contributed to a long-term decline in lung function (measured as forced expiratory volume in 1 second [FEV 1 ]) in patients with moderate-to-severe COPD. 12 , 13 In another study, symptom burden and exacerbation frequency were strongly correlated with the health-related quality of life in patients with moderate or severe COPD. 14 These results suggest that treatments that reduce exacerbation frequency could have a significant impact on health status and disease progression. Interestingly, even a single exacerbation could result in a significant increase in the rate of decline in lung function 15 and a sustained worsening of health status in patients with acute exacerbation of chronic bronchitis who likely had COPD as well. 16

Numerous studies have documented the association between exacerbation history and future exacerbation events ( Table 1 ). 4 , 17-22 Exacerbations are a major contributor to disease progression, with accelerated lung-function decline in patients who experience exacerbations, and the greatest decline seen in patients with mild disease. 23 Severe exacerbations are also associated with a significant increase in mortality, 24 making prevention of exacerbations the key goal in management of COPD. 1 Furthermore, the Global Initiative for Chronic Obstructive Lung Disease (GOLD) recommendations place a major focus on the role of exacerbations in determining treatment options with the updated ABCD disease risk stratification tool ( Figure 1 ). 1

Summary of the Association Between Exacerbation History and Prediction of Future Events a

a CI = confidence interval; COPD = chronic obstructive pulmonary disease; HR = hazard ratio; OR = odds ratio; RR = rate ratio.

Updated GOLD classification of COPD severity. 1 The GOLD guidelines updated in 2019 use exacerbation history and symptom burden to classify patient’s future exacerbation risk stratification (ABCD tool). However, the use of spirometry is vital to properly diagnose and gauge a prognosis for the disease. CAT = COPD Assessment Test, COPD = chronic obstructive pulmonary disease, GOLD = Global Initiative for Chronic Obstructive Lung Disease, mMRC = modified Medical Research Council, FEV 1 = forced expiratory volume in 1 second, FVC = forced vital capacity. Reproduced with permission from Global Initiative for Chronic Obstructive Lung Disease 2019 report (copyright © 2019 Global Initiative for Chronic Obstructive Lung Disease, Inc.).

Management of COPD

Stable copd.

Reduction in the risk of exacerbation, along with symptom management, is the cornerstone of the current strategy for management of COPD. 1 The main components of COPD management are appropriate pharmacotherapy (that addresses both symptom management and exacerbation prevention), promotion of smoking cessation, pulmonary rehabilitation, and regular follow-up monitoring for disease progression.

The GOLD ABCD tool combines symptom severity, using either the COPD Assessment Test score or the modified Medical Research Council scale, together with exacerbation risk, determined by either spirometry-defined airflow limitation or exacerbation history, to categorize patients into disease “risk stratification” groups ABCD to guide pharmacotherapy ( Figure 1 ). 25

Bronchodilators are central to management of COPD at all levels of severity. GOLD recommends specific treatment options for the initial therapy upon diagnosis of COPD in patients based on their ABCD classification ( Figure 2A ). This initial therapy differs from the follow-up treatment, which is based on current medication(s) and the most treatable trait (e.g., dyspnea or exacerbation; Figure 2B ) after ensuring correct inhaler technique and adherence to the initial treatment regimen. 1

Recommended initial (A) and follow-up (B) treatment options. CAT = COPD assessment test, COPD = chronic obstructive pulmonary disease, eos = eosinophil counts (cells/µL), FEV 1 = forced expiratory volume in 1 second, ICS = inhaled corticosteroid, LABA = long-acting β  2 -agonist, LAMA = long-acting muscarinic antagonist, mMRC = modified Medical Research Council. Reproduced with permission from Global Initiative for Chronic Obstructive Lung Disease 2019 report (copyright © 2019 Global Initiative for Chronic Obstructive Lung Disease, Inc.).

The preference for long-acting muscarinic antagonist (LAMA)/long-acting β  2 -agonist (LABA) combinations over inhaled corticosteroid (ICS)-containing regimens is supported by evidence from several studies. 26-29 In the LANTERN 26 and ILLUMINATE 27 studies, a combination of glycopyrronium/indacaterol (LAMA/LABA) significantly improved lung function compared with salmeterol/fluticasone (LABA/ICS) and decreased the incidence of pneumonia in patients with moderate-to-severe COPD. Similarly, a LAMA/LABA combination of tiotropium/olodaterol provided a greater improvement in lung function than salmeterol/fluticasone in patients with moderate-to-severe COPD in the ENERGITO® study. 28 In the FLAME study, 29 glycopyrronium/indacaterol was more effective than salmeterol/fluticasone in reducing the rate of COPD exacerbations and increasing the time to first exacerbation in patients with a history of exacerbations in the previous year. Notably, compared with LABA/ICS, LAMA/LABA combination therapy significantly reduced the rate of COPD exacerbations by 31% 26 and 11%, respectively, in patients with moderate-to-severe COPD who experienced either up to 1 or at least 1 exacerbation in the previous year.

A switch from LABA/ICS to LAMA/LABA is recommended if patients do not respond to ICS or where risks associated with ICS are a concern. 1 If patients have persistent exacerbations despite being on the LAMA/LABA or LABA/ICS treatment regimens, LAMA/LABA/ICS triple therapy should be considered. A switch from LAMA/LABA to a triple therapy should be guided by the biomarker assessment (i.e., patients with eosinophil counts of ≥100 cells/µL are more likely to benefit from the triple therapy). For patients with eosinophil counts of <100 cells/µL, roflumilast and azithromycin should be considered in patients with chronic bronchitis with severe airflow limitation (FEV 1 < 50%) and who are former smokers, respectively. 1

Trials assessing LAMA/LABA/ICS triple therapy have shown improved bronchodilator effects compared with LABA/ICS and LAMA alone. 30-32 Furthermore, triple therapy was shown to reduce exacerbations by 23% to 35% in patients who had experienced exacerbations in the previous year compared with LABA/ICS alone. 31 , 32 Escalation to triple therapy is recommended in the GOLD strategy document for patients who experience further exacerbations on LAMA/LABA or LAMA/ICS regardless of their ABCD assessment at diagnosis; however, GOLD recommendations note that there is a lack of direct evidence to indicate whether triple therapy will offer any further benefits to LAMA/LABA in absence of a biomarker assessment. 1 The GOLD guidelines include (since the 2017 update) guidance for de-escalation of treatment should additional therapies not result in incremental benefits, particularly with regard to removing ICS from treatment if no benefit is seen, if pneumonia is noted, or if ICS was prescribed for an inappropriate original indication, as deemed by a physician. 1 This is novel, because historical approaches to treating COPD have tended to be chronic and cumulative because of the progressive nature of the disease. An individual treatment approach should always be taken because patients show varied responses to available therapies.

Acute exacerbation

Short-acting bronchodilators, particularly short-acting β  2 -agonists, are recommended for treatment of exacerbations and can be combined with short-acting anticholinergics. 1 The addition of a systemic corticosteroid to the treatment regimen may be required for moderate-to-severe COPD exacerbations or those that do not respond to short-acting bronchodilators. European Respiratory Society/American Thoracic Society (ERS/ATS) guidelines recommend oral corticosteroids over intravenous corticosteroids for patients hospitalized with an exacerbation. 33 Although oral corticosteroid therapy is beneficial in resolving exacerbations, duration of corticosteroid use should be kept to a minimum to avoid possible side effects, including pneumonia. 1 ERS/ATS guidelines recommend treatment with corticosteroids for up to 14 days, whereas GOLD recommends a shorter time of 5 days. 1 , 33 The REDUCE trial 34 found that shorter courses of systemic corticosteroids (5 days) were noninferior to longer courses (14 days) for patients experiencing an exacerbation, with both treatments resulting in similar re-exacerbation rates within 6 months and similar lung-function recovery times. Antibiotics are recommended as an additional treatment for patients with increased sputum purulence that is indicative of bacterial infection. 1 GOLD provides little guidance regarding the choice of antibiotic other than recommending to consider local bacterial resistance patterns. 1

Factors that indicate the need for inpatient admission following onset of an exacerbation include patient inability to cope within the home environment, severe dyspnea and/or lack of response to initial treatment, and acute respiratory failure. 1

Opportunities for transitional care management

According to Hurst and colleagues, 35 exacerbations in COPD are not random events but occur in a high-risk period for recurrent exacerbation in the 8-week period following an initial exacerbation. This finding presents a therapeutic window for healthcare providers for preventative interventions. Reduction in the risk of future exacerbations is a key goal of COPD management, and patients should be started on appropriate maintenance therapy following an exacerbation. 1 Follow-up appointments after hospitalization for acute exacerbation are recommended for all patients within 1 to 4 weeks and 12 to 16 weeks postdischarge. These appointments should focus on areas including treatment regimen, inhaler technique, and measurement of symptoms.

Inhaler technique is often poor among patients with COPD, a factor that is associated with increased risk of ED visits and hospitalization. 36 Thus, initial and repeated reinforcement of patient education on inhaler technique is critical for COPD management. 1 , 36 Selection of an appropriate inhaler is also important for managing COPD, because patient satisfaction with the inhaler is thought to influence adherence. 37 Follow-up visits and patient education should also cover adherence to medication. 1 Poor adherence to maintenance therapies is common among patients with COPD and is often multifactorial. As the disease progresses, COPD typically requires more than 1 medication, which may not be delivered with similar inhalers. The use of multiple inhalers can be confusing to patients and lead to poor inhaler technique. 38 Also, the lack of generic inhaled options can affect cost, which also can negatively influence adherence. Poor adherence is associated with increased mortality rates, whereas higher adherence is associated with reduced hospitalizations. 39 In addition, errors related to inhaler handling are associated with an increased rate of severe COPD exacerbations. 40 Consequently, GOLD 2019 report, for the first time, highlights the importance of assessing inhaler technique and adherence in patients with poor symptom control before adjusting patients’ medications/treatment regimen. 1 Community, clinical, and hospital pharmacists can provide medication-related education for patients with COPD, including the purpose and value of taking maintenance medications, the importance of adherence, proper inhaler technique, and how to troubleshoot and maintain their inhalers. A review of studies conducted during a 10-year period showed that inhaler training education and medication adherence by community pharmacists had a positive impact, resulting in significant reduction in inhalation errors, improvement in the choice of inhalers, and better adherence to inhaled medication. 41

Implications for the health system and managed care community

Exacerbations of COPD are a major cause of healthcare resource use because they increase physician office visits, ED visits, hospitalizations, and pharmacy use compared with stable COPD. 4-7 Data from large prospective and retrospective studies suggest that ~37% to 71% of patients with COPD experience at least 1 exacerbation annually. 4 , 6 , 17 , 42 Exacerbations can also occur in patients with mild COPD but are underreported. 43 Among patients who experience a COPD exacerbation, ~9% to 31% require an ED visit and ~14% to 35% require hospitalization. 4 , 6 , 7 , 17 , 42

Milder exacerbations can often be treated on an outpatient basis, but those which are moderate to severe in nature may prompt ED visits or hospitalization, leading to higher treatment costs with increased exacerbation frequency and severity ( Table 2 ). 4 , 6 , 18 , 42 , 44-49 Mean cost of treatment for a severe exacerbation that requires hospitalization can range from $7,000 to $39,200, with costs substantially elevated for patients who require mechanical ventilation ( Table 2 ). Comorbidities, including cardiovascular disease and lung cancer, are common in patients with COPD and are significantly associated with both higher costs and increased mortality following hospitalization for a COPD exacerbation. 45 Survival rates at 5 years after a hospitalization for a COPD exacerbation are estimated to be only 45%. 24

Estimates of the Costs of Treating COPD Exacerbations in the United States a

a CI = confidence interval, COPD = chronic obstructive pulmonary disease, ED = emergency department, GOLD = Global Initiative for Chronic Obstructive Lung Disease, ICD-9 = International Classification of Diseases 9th revision, ICU = intensive care unit, S.D. = standard deviation.

b Costs calculated from whole population including patients who did not use the service. GOLD airflow limitation severity classification: GOLD 1 (mild), forced expiratory volume in 1 second (FEV 1 ) ≥80% predicted; GOLD 2 (moderate), FEV 1 50% to 79% predicted; GOLD 3 (severe), FEV 1 30% to 49% predicted; GOLD 4 (very severe), FEV 1 < 30% predicted.

Hospital readmissions within 30 days of discharge after an acute COPD exacerbation occur in ~20% of patients. 8 Studies have shown that factors associated with re-exacerbation and readmission include longer duration of hospital stay, low FEV 1 , comorbidities, high modified Medical Research Council dyspnea score, and previous admissions. 50 , 51 A study of 90-day readmission rates following acute exacerbations found that readmission was ~35% and was significantly associated with increased mortality (13.4% in readmitted versus 2.3% in nonreadmitted patients). 50

Patients who experience numerous readmissions may have a phenotype known as the “frequent exacerbator.”  52 It is hypothesized that patients with this phenotype have an altered adaptive (CD4 and CD8 T cell) immune system that attenuates an inflammatory response, facilitating COPD exacerbations. 53 However, this phenotype is not only seen in patients with the most severe airflow obstruction. The ECLIPSE study found that 22%, 33%, and 47% of patients with moderate, severe, and very severe airflow obstruction, respectively, were frequent exacerbators. 18 This high prevalence of the frequent-exacerbator phenotype, even among patients with moderate airflow obstruction, is particularly concerning because of the detrimental effects that exacerbations exert, including accelerating lung-function decline, reducing quality of life, and increasing hospitalizations and mortality. 52 These factors, together with implementation of the Affordable Care Act Hospital Readmissions Reduction Program, whereby hospitals with higher-than-expected 30-day readmission rates for COPD are financially penalized, have highlighted the need for strategies to reduce readmissions and improve overall patient care. 8

Several studies have assessed readmission characteristics and trialed ways to reduce readmissions following discharge after acute exacerbation. A disease-management program for COPD, which provided follow-up in the community after hospital discharge, was found to reduce COPD-related and all-cause 60- and 90-day readmission rates. 54 This program included home visits, clinical assessment, medication review, inhaler technique training, and disease-education components. Care team members typically included a nurse practitioner, a registered nurse, and a respiratory therapist. 53 Patients discharged to skilled nursing facilities were found to be less likely to be readmitted to a hospital within 30 days of discharge than those discharged home, with or without home care (18.8%, 27.7%, and 31.1% readmission rates, respectively). 8 In a prospective, observational study, a COPD care bundle, involving a multidisciplinary team of respiratory therapists, pulmonologists, pharmacists, critical care physicians, general internists, and nurses, was also found to improve care of patients with COPD exacerbations. 55 This bundle included standard nursing protocols, patient education on inhaler use and medication, and postdischarge referrals to pulmonologists and was found to significantly reduce 30- and 60-day readmissions compared with control (9.1% versus 54.4% for 30-day and 22.7% versus 77.0% for 60-day). Length of hospital stay was also reduced following implementation of the care bundle, as were the total aggregate hospital costs at 90 days postdischarge, which were reduced from $19,954 to $7,652.

In contrast, others have found that use of care bundles did not result in reduced readmission rates in patients with acute exacerbations of COPD. 56 , 57 In a single-center randomized study, a care bundle that included smoking cessation counseling, patient education, and telephone follow-up did not reduce 30- and 60-day readmission rates. 56 Similarly, a Medicare Bundled Payments for Care Improvement Initiative, in which patients were more likely to receive telephone follow-up, pulmonary rehabilitation, pulmonologist appointments, and home care, did not significantly reduce 30- or 90-day readmissions and was found not to be cost-effective. 57

Pulmonary rehabilitation programs that involve a multidisciplinary approach, including exercise therapy and patient education, have been shown to improve health-related quality of life in patients with COPD. 58 A 5-year study of the use of a pulmonary rehabilitation program with negative pressure ventilation found that during the first 4 years, patients with pulmonary rehabilitation and negative pressure ventilation had increased exercise capacity and reduced lung-function decline. 59 Furthermore, in patients who received pulmonary rehabilitation and negative pressure ventilation, risk of exacerbations requiring ED visit or hospitalization was reduced by 66% and 54%, respectively, and annual total medical costs were reduced when compared with patients who were assigned to an exercise program alone ($3,274 ± $1,604 versus $4,335 ± $3,269). ERS/ATS guidelines recommend starting pulmonary rehabilitation within 3 weeks of hospital discharge. 33 Limited access to pulmonary rehabilitation remains an issue for many patients who could otherwise benefit from this resource. 1

Maintenance medication therapy remains a key strategy to reduce hospitalizations due to acute COPD exacerbations. The timing of maintenance therapy initiation following an acute exacerbation in naive patients can significantly affect outcomes, with patients who started maintenance more than 30 days postdischarge having significantly higher risk (43%) of COPD-related hospitalization or ED visit in the following year. 60 Others have agreed with these findings and found that initiating maintenance therapy within the first 30 days of discharge resulted in significantly reduced COPD-related ED visits (36.7%), office visits (12.1%), and outpatient costs (39.0%) in the following year. 61 A large retrospective study of claims data found that after a moderate exacerbation requiring a prescription for an oral corticosteroid, only 25% of patients were prescribed maintenance therapy. 62 Based on data from the TORCH trial, adherence to maintenance medication is also vitally important in reducing hospitalizations and mortality. 39

COPD exacerbations, particularly those that require ED visits or hospitalization, lead to substantial economic burden. Patients who have frequent exacerbations have reduced quality of life and accelerated disease progression. Appropriate therapy with maintenance bronchodilators has been shown to reduce exacerbation frequency but is underused, highlighting a need for increased awareness of treatment recommendations among treating physicians, prescribers, and healthcare organizations in which patient care could be improved. Several studies have found that COPD aftercare programs that increase patient support are beneficial in improving outcomes and reducing hospitalizations. Programs that include referrals to pulmonologists, patient education and inhaler technique training, and pulmonary rehabilitation have been shown to be successful and, in combination with appropriate maintenance therapy, could improve the lives of patients with frequent exacerbations. This highlights that continuing the move toward integrated care of COPD is the way to achieve better outcomes.

Disclosures

Editorial support and/or formatting assistance was provided by Suchita Nath-Sain, Ph.D.; Saurabh Gagangras, Ph.D.; Dhananjay Arankale, B.N.Y.S., PGDPH; and Vidula Bhole, M.D., M.H.Sc., of Cactus Communications, which was contracted and compensated by Boehringer Ingelheim Pharmaceuticals Inc. The authors have declared no potential conflicts of interest.

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Back to Journals » International Journal of Chronic Obstructive Pulmonary Disease » Volume 13

A case scenario study for the assessment of physician’s behavior in the management of COPD: the WHY study

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Authors Kilinc O , Konya A , Akgun M   , Uzaslan E , Sayiner A

Received 20 October 2017

Accepted for publication 21 May 2018

Published 5 September 2018 Volume 2018:13 Pages 2751—2758

DOI https://doi.org/10.2147/COPD.S154616

Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 2

Editor who approved publication: Dr Richard Russell

Oguz Kilinc, 1 Aylin Konya, 2 Metin Akgun, 3 Esra Uzaslan, 4 Abdullah Sayiner 5 1 Department of Chest Diseases, Dokuz Eylül University Medical Faculty, Izmir, Turkey; 2 Department of Medical Management, Novartis Pharmaceuticals, Istanbul, Turkey; 3 Department of Chest Diseases, Atatürk University Medical Faculty, Erzurum, Turkey; 4 Department of Chest Diseases, Uludağ University Medical Faculty, Bursa, Turkey; 5 Department of Chest Diseases, Ege University Medical Faculty, Izmir, Turkey Purpose: COPD diagnosis is mainly based on clinical judgment of physicians. Physicians do not also refer to COPD guidelines in their daily practice. This study aimed to assess attitudes of physicians regarding COPD diagnosis, treatment, and follow-up and to identify the factors influencing physicians’ decisions in clinical practice. Patients and methods: Fifty physicians were selected from 12 EuroStat NUTS 2 regions and asked to assess seven fictitious case scenarios. The following five scenarios described patients with COPD: Case Global Initiative for Chronic Obstructive Lung Disease (GOLD) A-smoker and Case GOLD A-nonsmoker were previously undiagnosed patients presenting with dyspnea, Case GOLD D-smoker and GOLD B-exsmoker were COPD patients presenting with exacerbation, Case GOLD B-smoker was a previously diagnosed COPD patient with dyspnea in stable phase, Case asthma–COPD overlap syndrome, and Case obesity hypoventilation syndrome. Patients’ history, physical examination findings, pulmonary function tests, and X-ray images were prepared before the study by an experts’ committee and provided to the physicians upon their request, until they reached a final decision. The physicians completed a questionnaire including information about their clinical practices and institutions. Results: According to the GOLD 2015 recommendations, of the physicians, 44% performed guideline-concordant diagnosis in the first five scenarios, who were all COPD patients, and 6% performed guideline-concordant diagnosis in all cases. There was a negative correlation between high workload and making a guideline-concordant diagnosis ( P =0.038, rho =-0.417). Even when the physicians made a guideline-concordant diagnosis of COPD, only a minority (10%–22%) used the GOLD classification. Logistic regression analysis revealed that working in a tertiary health care center was a significant factor in favor of establishing a guideline-concordant diagnosis of COPD ( P =0.029, OR =6.139 [95% CI: 1.20–31.32]). Conclusion: Management of COPD patients in Turkey does not generally follow the GOLD criteria but is rather based on physicians’ clinical experience. Heavy workload appears to adversely affect the correctness of clinical decisions. Keywords: COPD, practice pattern, real-life scenario, physician decision, GOLD criteria

Introduction

COPD is a global public health concern that causes significant morbidity and mortality with an increasing trend. 1 In 2011, age and gender standardized national prevalence rates of COPD in Turkey were reported to be 5.3% and 4.0%, respectively, when the disease was diagnosed based on pulmonary function tests (PFTs) and physicians’ assessments. 2 Owing to the discordance between these two rates, a practice pattern study (ALPHABET) was conducted to examine how COPD patients were evaluated in real life. 3 The ALPHABET study showed that the ratio of forced expiratory volume in 1 second (FEV 1 ) to forced vital capacity was ≥70% in 40% of the patients previously diagnosed with COPD. Besides, the most common treatment regimen, which was used in 62% of COPD patients, was triple therapy, ie, the combination of long-acting β2 agonists (LABA), inhaled corticosteroids (ICS), and long-acting muscarinic antagonists (LAMA). 3 The same study also showed that physicians’ compliance to multidimensional assessment approach, as outlined by the Global Initiative for Chronic Obstructive Lung Disease (GOLD) strategy, was relatively low. In a study from the United States including the records of 450 patients with COPD confirmed by spirometry, it was demonstrated that 43.6% of the patients were not receiving guideline-based treatment and, of these patients, who were all GOLD stage I, 7.6% were overtreated. 4 Moreover, another study from the United States reported that 23.1% of the COPD patients received a treatment that was not consistent with any of the guidelines’ recommendations irrespective of disease severity. 5 Based on these findings, the current study, which was called “WHY Study”, was designed to evaluate attitudes of physicians regarding COPD diagnosis, treatment, and follow-up and to identify the factors influencing physicians’ decisions in clinical practice.

Patients and methods

The present study was designed as a practice pattern survey and conducted from April to July 2015. The study was approved by the ethics committee of Dokuz Eylul University Medical Faculty (date: December 18, 2014; no: 2014/37-02). Written and signed informed consents of the physicians to participate in the study were obtained.

No actual patients were enrolled; however, fictitious case scenarios were used to represent patients with COPD. For each case scenario, demographic features, medical histories, physical examination findings, and medical and screening test results were prepared prior to the study.

Fifty physicians who were working in different tertiary (university hospitals or training and research hospitals) and secondary (state hospital or private hospital) health care centers and willing to participate in the study were included. The centers were selected from 12 provinces (Adana, Ankara, Samsun, Balikesir, Trabzon, Bursa, Izmir, Gaziantep, Istanbul, Erzurum, Kayseri, and Van) according to the European Community Regional Policies Level 2 Statistical Regional Units (EuroStat NUTS 2 regions) to provide a representative sample of Turkey. In Turkey, the tertiary health care centers are also academic centers, which have residency programs and train pulmonology fellows. These consist of university hospitals and a total of four research and training hospitals for pulmonary diseases. The secondary health care centers are state hospitals, which only provide patient care.

Case scenarios

All scenarios and related documents were produced by the steering committee of the study based on the recommendations of the GOLD document and the Turkish Thoracic Society’s COPD guideline, similar to the methodology used by Fukuhara et al. 6 The members of the committee were physicians with a special interest in COPD, working as consultants in academic institutions. The participants were expected to order the correct diagnostic tests, to evaluate the quality of the spirometry, to use the right parameters (level of FEV 1 , symptom score, and history of exacerbations) for classifying the patient, and to choose a treatment regimen that was concordant with the guidelines.

The following five scenarios described patients with COPD: Case GOLD A-smoker and Case GOLD A-nonsmoker were previously undiagnosed patients presenting with dyspnea, Case GOLD D-smoker and GOLD B-exsmoker were COPD patients presenting with exacerbation, Case GOLD B-smoker was a previously diagnosed COPD patient with dyspnea in stable phase. The remaining two cases, which are sometimes misdiagnosed and/or treated as COPD, were Case asthma-COPD overlap syndrome (ACOS) and Case obesity hypoventilation syndrome (OHS). Each case scenario included the results of medical and screening tests that are usually used in clinical practice for diagnosing COPD patients. Detailed description of the case scenarios is presented in Table S1 .

The same PFT result sheet was used for all COPD cases. However, Case ACOS and Case OHS had distinctive PFT result sheets. In some cases, some tricky PFT results, compatible with a noncooperative patient, were first given to the physicians, expecting them to request an acceptable PFT result sheet. Similarly, chest X-rays of poor technical quality were also given. Thus, a patient dossier was prepared for each case scenario.

During face-to-face interviews, physicians examined the history and laboratory and radiographic findings and requested additional tests, whenever they felt a need, until they reached a decision for each of the seven case scenarios ( Table 1 ). In these interviews, the GOLD classification of the cases was not asked to the physicians; however, they were evaluated by checking whether they asked for the correct clinical parameters to classify the patients, namely symptom scores, history of exacerbations, and FEV 1 levels.

The tests requested by the physicians were recorded. There was no limitation in time for the physicians to review the cases in detail. If the physicians required more tests for decision making, the results of all required tests were given and were also recorded. Physicians were also asked to complete the “Physician Questionnaire” that included questions about their institutions, number of patients they examine in routine daily practice, years of working as a clinician, whether PFT and chest X-rays were performed in their institution, his/her routine procedures to examine a new COPD patient, and whether he/she routinely used a questionnaire to assess the symptoms and/or health-related quality of life of patients. All questionnaires were collected by the interviewers and transferred to the study center for data management.

Statistical analyses

Predictive Analytics Software for Windows Version 18.0 (SPSS Inc., Chicago, IL, USA) was used for statistical analysis. In descriptive statistics, categorical variables were expressed as numbers and percentages and numerical variables were expressed as median (minimum–maximum). Two-group comparisons between categorical variables were performed using the Chi-square test or the Fisher’s exact test, as required. The Spearman’s rho test statistics was used in correlations for non-normal distributed numerical data. Multivariate logistic regression analysis was performed to determine the factors affecting the guideline-concordant diagnosis. Statistical significance level was set at a P -value of <0.05.

Of the 50 physicians included in the study, 31 (62%) physicians were working in a tertiary health care center and the remaining 19 physicians were working in a secondary health care center. The median number of years worked as a specialist was 7 years (range, 1–33 years), and 65.3% of the physicians had been working as a specialist for ≤10 years. The median number of patients examined daily by the physicians was 40 (range, 8–90). Spirometry was available in all institutions. Features of the physicians are summarized in Table 2 .

While 44% (n=22) of the physicians performed guideline-concordant diagnosis in the five COPD cases, only 6% (n=3) of the physicians performed guideline-concordant diagnosis in all seven cases ( Table 3 ). There was a negative correlation between the workload (≥40 patient examinations per day) of the physicians and the likelihood of making a guideline-concordant diagnosis ( P =0.038, rho =−0.417). There was no relationship between a guideline-concordant diagnosis and the working place (tertiary or secondary health care center) as well as the number of years worked as a specialist ( P >0.05, for both). In multivariate logistic regression analysis performed to determine the factors (including gender, number of years working as a specialist, working place [secondary or tertiary health care center], and number of patients examined daily) affecting the guideline-concordant diagnosis, working in a tertiary health care center was found to be the only significant factor in favor of establishing a guideline-concordant diagnosis of COPD ( P =0.029, OR =6.139 [95% CI: 1.20–31.32]).

Independently from failures in the diagnosis and categorization of COPD patients, guideline-concordant treatment rates were 20%, 46%, 84%, 20%, 18%, and 24% in Cases GOLD A-smoker, GOLD A-nonsmoker, GOLD D-smoker, GOLD B-exsmoker, GOLD B-smoker, and ACOS, respectively. The guideline-concordant treatment rates for guideline-concordant diagnosed and categorized patients were 4%, 6%, 4%, 2%, and 2% in Cases GOLD A-smoker, GOLD A-nonsmoker, GOLD D-smoker, GOLD B-exsmoker, GOLD B-smoker, and ACOS, respectively. While the lowest rates for guideline-concordant diagnosis and guideline-concordant treatment were seen in Case GOLD A-smoker and Case ACOS, Case GOLD D-smoker was associated with the highest rates of correct answers ( Table 3 ) (details are presented in Table S2 ).

The rate of guideline-concordant diagnosis among physicians who used appropriate PFT was 38% in Case GOLD A-smoker, whereas the rates increased to 74%, 78%, 80%, and 82% in Case GOLD A-nonsmoker, Case GOLD D-smoker, Case GOLD B-exsmoker, and Case GOLD B-smoker, respectively. However, even when a guideline-concordant diagnosis of COPD was made, only a minority of the physicians (10–24%) used the GOLD classification and gave guideline-concordant treatment ( Figure 1 ).

The present study evaluated the physicians’ behaviors on COPD management using fictitious case scenarios and showed that the patients’ characteristics influenced the physicians’ decision making. This influence was more apparent in newly diagnosed patients. The classification of the cases according to the GOLD 2015 criteria was also problematic. Besides, correct parameters were used by 10%–24% of the physicians and correct classification was performed only by 2%–6%. Moreover, only 4–7 of the physicians used the correct tools for decision making. In spite of the problems in the classification, 18%–84% of the physicians prescribed the appropriate treatment.

Although Case GOLD A-smoker and Case GOLD A-nonsmoker were newly diagnosed patients, they differed in age and smoking status, which might have led to different rates in guideline-concordant diagnosis (38% vs 74%). In contrast, Case ACOS was concordantly diagnosed by a higher proportion of the physicians. Case OHS was previously misdiagnosed and treated as COPD and was concordantly diagnosed only by eight physicians. Thus, a previous diagnosis of COPD appears to mislead the physicians to continue with the same mistake. Each new encounter should give the physicians a chance to re-evaluate their patients.

The distribution of COPD patients among the GOLD categories has been evaluated by several studies. The proportion of cases in GOLD A category is roughly between 30% and 40%. 7 – 9 The national ALPHABET study reported that GOLD A and D were the two most prevalent COPD categories, comprising 41.1% and 25.0% of the patients regularly seen at secondary and tertiary health care centers. 3 As these were the most common categories, physicians are expected to diagnose and manage such patients appropriately in accordance with the GOLD guidelines. However, the rates of guideline-concordant diagnosis and treatment were low, possibly due to the tendency of physicians to make decisions based on their clinical experience, particularly in these low-risk groups with lesser symptoms. 3 In a multicenter study conducted on 4,094 patients in Italy to investigate whether pulmonologists follow the GOLD guidelines in prescribing COPD treatment, they reported that 62.1% of the patients were receiving inappropriate treatment in accordance with the GOLD recommendations. 10 In a study conducted to investigate the rates of adherence to GOLD 2010 guidelines for COPD treatment among pulmonologists in Turkey, overall adherence to GOLD recommendations was 59.5%. 11 In another study from Turkey, adherence to guideline recommendations for COPD patients was found to be 48.2%. 12 In the present study as well, the rate of guideline-concordant diagnosis among physicians who used appropriate PFT was 38% in Case GOLD A-smoker, while the rates increased to 74%, 78%, 80%, and 82% in Case GOLD A-nonsmoker, Case GOLD D-smoker, Case GOLD B-exsmoker, and Case GOLD B-smoker, respectively. However, even if the guideline-concordant diagnosis of COPD was performed, only a minority (10%–24%) of the physicians used the GOLD classification.

The diagnosis of COPD should be based on the evaluation of PFTs; however, several previous studies which evaluated the practice patterns of physicians to diagnose COPD have shown that clinical experience has a significant impact on diagnosis and frequently replaces spirometry. An Italian study reported that for patients examined by general practitioners, the COPD diagnosis was based on the physicians’ decisions in 30%. 13 Similarly, another study from Tasmania reported that 30% of the patients diagnosed with COPD had no spirometric evaluation. 14 Moreover, a Chinese study reported that 64.3% of the hospitals lacked spirometers for COPD diagnosis. 15 A more recent study from China also reported that knowledge about COPD was fairly low among general practitioners. 16 In a multinational study including centers from the Europe and the United States, 24% of the COPD patients reported that they had not undergone a spirometry test. 17 As can be seen from different population examples, PFTs are not always incorporated in the diagnosis and management of COPD in several parts of the world. The present study showed that spirometry was frequently overlooked in clinical practice in Turkey and that the physicians had problems in interpreting the results when it was performed.

It thus appears that despite educational efforts including scientific meetings, webinars, and national guidelines, important issues remain in the diagnosis and guideline-concordant management of COPD patients in Turkey. There is a strong need to re-evaluate the effectiveness of the current educational tools, to assess clinicians’ needs, and to focus more on improving the practice and clinical behavior of pulmonologists caring for COPD patients.

Another interesting finding was the relationship between workload and guideline-concordant diagnosis. The median number of patients examined by the physicians was found to be 40 per day, and with a rough calculation, the physicians had only 12 minutes per patient for examination and decision making. The workload was particularly higher in state hospitals. A recent study by Musellim et al, 18 however, suggested that in pulmonary practice, the average time allocated to each patient should be 20 minutes and that physicians should spare 25 minutes for patients with chronic lung disorders. In reality, however, under time constraints for each patient, physicians appear to depend more heavily on their clinical experience and possibly use preconceived templates in the evaluation and management of COPD patients. This lack of objective and individual assessment may be another explanation for the low rates of guideline-concordant diagnosis.

One of the limitations of the present study was the use of fictitious cases, which might not reflect real-life practices. However, in order to better evaluate the practice patterns, standard questions on standard clinical problems had to be directed to the physicians. Besides, the findings may be an underestimation of the problem, because the physicians would be less likely to make objective and individualized assessments of patients and be more prone to act on their reflexes due to serious time constraints and several distracting factors in the real-life setting. Another limitation could be the relatively low number of participants, which may raise concerns regarding the generalizability of the findings to the Turkish pulmonologist population. However, each participating physician was from a different medical center and each center was chosen from different provinces according to the EuroStat NUTS 2 regions and, thus, the present study population should be a representative sample.

To the best of our knowledge, this is the first study that evaluated the physicians’ behaviors in the process of diagnosis, treatment, and follow-up of COPD. The results of the present study revealed that the management of COPD patients in Turkey was not in accordance with the GOLD recommendations and was rather based on the physicians’ clinical experience. This appeared to be related to heavy workload. Therefore, medical associations and professional societies should put more efforts for advocacy to decrease patient burden on physicians and to improve the quality of patient care. Besides, more work needs to be done both to raise awareness of physicians on evidence-based management of COPD patients and to reflect this knowledge in their clinical practice. There is a need for further studies evaluating the effects of educational interventions on physicians’ knowledge and behavior.

Acknowledgments

We thank Clinical Research Manager Clinical Research Organization who provided editorial support and performed statistical analysis funded by Novartis Pharmaceuticals, Turkey.

Author contributions

All authors contributed toward data analysis, drafting and critically revising the paper, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

AK is an employee of Novartis Pharmaceuticals, Turkey. The authors report no other conflicts of interest in this work.

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Two Social Security Claiming Case Studies, One Conclusion

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This is the latest in a series of biweekly articles featuring Social Security claiming case studies drawn from the ALM publication “ 2024 Social Security & Medicare Facts ,” by Michael Thomas with support from Jim Blair, a former Social Security administrator, and Marc Kiner, a planning expert with extensive experience in public accounting.

Scenario No. 1: Single Earner With the Option to Delay

Virginia was never married and is not eligible for benefits from any other individual’s work record. She was born in September 1962, meaning her full retirement age is 67, and her projected monthly FRA benefit is $2,024.

Given this straightforward situation, Virginia’s options are limited to filing for benefits on her own work record between ages 62 and 70.  If she delays benefits past her full retirement age, she will earn delayed retirement credits — but when she dies, the benefit ends, and no survivor will benefit from the bigger monthly check.

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What the Numbers Show

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The optimal approach, according to the authors, is for Virginia to wait until September 2032 to file for her maximum benefit of $2,509 at age 70. This results in a projected lifetime benefit of $521,872 — an increase of more than $90,000.

Scenario No. 2: Married Couple Five Years Apart in Age

Another scenario considered by the authors involves George and Joan, a married couple five years apart in age. Given their birth years, George will reach full retirement age at age 66 1/2, while Joan reaches her FRA at 67.

In the scenario, George had significantly more income than Joan, who is expected to survive George by 7 1/2 years.

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George’s FRA benefit is $2,647, while Joan’s is $724, and the pair has as many as six claiming scenarios to consider. These come along with more than a $100,000 difference in the lifetime projected benefits for the couple.

The least optimal strategy for this couple, according to the authors, would have seen George file in January 2024 for a slightly reduced worker benefit of $2,602, while Joan waits to file for her reduced benefit of $509 in October 2024. Eventually, Joan would switch to collecting her survivor benefit ($2,602), delivering projected lifetime benefits of just over $1 million.

A better approach would have seen George wait for April 2024 to file for his FRA worker benefit of $2,647, while Joan waits until September 2029 to file for her FRA benefit of $724. She then, once again, eventually switches to her survivor benefit, delivering about $18,000 in additional lifetime benefits.

A much bigger increase comes from assuming that George waits until October 2027 to file for his maximum worker benefit of $3,388, while Joan waits until age 67 to get her FRA worker benefit of $724. She would also file for her spousal benefit at that time, and this would “top up” her benefit to $1323.50.

Joan then switches to the maximum survivor benefit down the line, garnering a total projected lifetime benefit of more than $1.1 million.

So, Is Delaying Always Best?

While these case studies show the power of delayed Social Security claiming in many scenarios, there are particular situations where claiming earlier makes sense — either from a benefit maximization perspective or as a matter of necessity.

For example, a prior case study in this series showed that a couple with a big age gap could potentially benefit from the lower-earning spouse claiming their benefit at age 62 while the higher earner — the older member of the couple — waits until age 70 to claim their benefit. This approach delivers an excess $130,000 in projected benefits of early claiming.

In other situations, people simply cannot afford to delay claiming due to their inability to work beyond age 62 or due to a lack of other income sources that can make waiting for the FRA or maximum benefit feasible. In the end, each couple and individual has to asses their distinct claiming options, and wealth maximization isn’t the only factor in the calculus.

Credit: Chris Nichols/ALM

John Manganaro

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Growing OkraOut: A Case Study

Lessons from 5 years of collaborative design, development, and implementation while building an lgbtq+ library outreach program.

Afton Fawn Ussery and Sofiya Petrova Dahman *

In the past five years, Delta State University’s academic library has made significant efforts to develop sustainable outreach programs that support the LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer+) community. This program has increased the library’s visibility and enhanced its image among its students, faculty, and staff. The article describes the outreach program’s effort, and the collected data will provide a framework for others interested in designing and hosting such programs, including adaptability during the COVID-19 pandemic. 

Background Information

Members of the Roberts-LaForge Library at Delta State University have hosted an LGBTQ+ Pride event for the past five years. The event and committee are known as OkraOut, which refers to the university’s student mascot of the Fighting Okra. The student body voted on the mascot in the late 1980s/early 1990s as the school’s unofficial mascot. Inspired by Boyer’s (1996, p. 18) definition of scholarship of engagement, this committee held diverse events to promote library services, while also increasing the quality of engagement activities for the local community and the university population at a small college campus.

Problem Statement

The LIS literature on the information needs of, and specific outreach to, LGBTQ+ students is an emerging focus of Academic Libraries, yet there are still few examples in the scholarly literature of programs like OkraOut. This case study aims to detail the process of developing such outreach to help address that gap. This study also adds to the current body of research, examples, and knowledge concerning collaborations between universities, across campus, and the community in outreach programs.

Introduction

Many libraries provide inclusive acknowledgments in their mission or vision statements. However, equally important is how libraries can do more to celebrate and proudly serve all users. We, as librarians, must go the extra step to celebrate and give visibility to our most “invisible regulars” (Naidoo, 2013, p. 40). This article suggests ways for academic libraries, specifically, to be more proactive and to move beyond simple steps such as mission statement language, or buying more LGBTQ+ books for June Pride displays.

The Seeding Stage

The authors met and began working together at Delta State University in 2016. They witnessed a need in their community and were motivated to create an event celebrating a specific population of patrons. ALA’s (American Library Association) Gay, Lesbian, Bi, and Transgender (GLBT) Round Table Toolkit states that:

It is vital to create a welcoming environment for GLBT library users in their communities, campuses, and schools. Library users of all ethnic and racial backgrounds, nationalities, socio-economic classes, and abilities look for materials that include and celebrate diverse experiences within GLBT communities and promote accessible and inclusive programming. With this statement in mind, the authors recognized that their academic library was not fulfilling the needed accessible and inclusive programming.

This need was even more crucial as the authors’ library is located in the middle of the Mississippi Delta. Delta State University is a small four-year public university with library services that serves around 5,000 students, faculty, staff, and community members. According to the University’s mini factbook of 2020–2021 (Delta State University, 2021), Mississippi and Tennessee are the top two states represented among the students. Two thousand four hundred forty-one students were from Mississippi, and sixty-two were from Tennessee, two hours north of Cleveland, Mississippi.

Currently, there are no explicit, comprehensive statewide non-discrimination protections for gay, lesbian, bisexual, or transgender people in Mississippi. Instead, there are discriminatory anti-LGBTQ+ laws, including the MS HB 1523 and the Religious Liberty Accommodations Act. The legislature allows people and organizations to decline services to queer people based on religious beliefs. In 2021, Mississippi’s governor signed SB 2536, an anti-transgender sports bill, marking the first piece of specifically anti-transgender legislation to become law. These laws restrict and negatively affect the LGBTQ+ community. Unfortunately, the number of harmful laws against the LGBTQ+ communities is rising nationwide; the Human Rights Campaign (HRC) declared 2021 the “worst year for LGBTQ+ state legislative attacks” (Ronan, 2021).

Tennessee is also home to sweeping anti-LGBTQ+ legislation. Such bills include anti-transgender legislation SB126, which restricts access to gender-affirming care by limiting health providers’ ability to prescribe Hormone Replacement Therapy to prepubertal minors. Violations of this bill result in a misdemeanor. Along with the anti-transgender sports bill that the Tennessee Governor signed into law, the HB3 and SB228 bills prohibit transgender students from participating in school sports and require student-athletes to be gendered as assigned at birth, demonstrated by their original birth certificate. Outside the school buildings and inside the state’s communities, there are the HB1182 and SB1224 bills, which require businesses that allow people to use restrooms according to their gender identity to post a warning at the entrance of the building and bathrooms.

The authors were aware of the political atmosphere in their region; in addition, they witnessed an interest on campus for LGBTQ+ displays within the library, so they sought to create an event or outreach opportunity for inclusion. Previously, there was a Gay and Lesbian Alliance Student Organization, but it had declined in interaction over the years. At the inception of OkraOut, there were no current on-campus, or even in-community, support groups or events for LGBTQ+ individuals. Outreach activities allow libraries to serve users by being more visible, and developing more substantial campus and community relationships, and so the authors started planning what would become OkraOut.

Keeran and Forbes (2018, p. 250) note that the four critical elements of a successful outreach program are: 1. strategic vision and planning; 2. program development and implementation; 3. community outreach; and 4. expanding outreach audiences. This article’s authors relied on these elements and worked specifically to expand outreach to include all patrons. Librarians and staff have an ethical and professional duty to provide information to all they serve. For example, the American Library Association’s Library Bill of Rights and Codes of Ethics urges librarians and libraries to offer resources and services to all persons, regardless of their backgrounds or views. The authors assembled a committee to contribute ideas, planning, and developing and implementing action. The duties of the event planning committee also included providing information on sexuality, gender identity, and coming out for library patrons. This outreach was to position the library as a key information source for the queer community.

Literature Review

As mentioned, the information needs of LGBTQ+ students in academic libraries is an emerging focus of LIS literature. Strategies, case studies, and best practices for providing library support and services to specialized student populations are responses to this need. The authors have included similar studies within this literature review for further interest.

Research suggests that LGBTQ+ students may experience higher than-usual stresses and difficulties when transitioning from high school. According to Dentato et al. (2013), identity formation often occurs during high school and further on through the colligate experience. There is a growing understanding that libraries must also be active in supporting that development (Dentato, et. al, 2013, p. 10). Renn and Bilodeau (2005, p. 42) add that the post-secondary curriculum—including the library—is vital in facilitating LGBTQ identity development. They viewed models of identity development through the perspectives of student affairs professionals. Doing so developed helpful literature concerning LGBTQ+ people of color, life span approach to LGBTQ+ identity development, and approaches to transgender identity development.

Mehra and Braquet (2011, pp. 401–422) examined the reference department and how they assisted LGBTQ+ patrons. They created an exploratory practice-based framework that identified strategic goals, objectives, and activities for each of the five areas of modern-day references, such as access to electronic resources, user instruction, library commons, outreach liaison, and virtual reference, with a focus on meeting the needs of LGBTQ individuals during the coming out process. They utilized qualitative studies and action research conducted by two library and information science professionals in an academic library. They sought to extend the idea of a traditional reference interaction—one focused solely on information provision—to a more encompassing conceptualization and implementation that designs, delivers, and accesses reference services in a community engagement context to develop fair and equitable services for LGBTQ patrons. Todorinova and Ortiz-Myers (2019, pp. 66–87) engaged public services librarians working in administrative or managerial positions in a conversation about LGBTQ+ needs. There was uncertainty between the library’s role in promoting LGBTQ+ friendliness and the role of the larger university, which may be related to the uncertain position of the library in the campus environment. However, the empathy that librarians, in both decision and non-decision-making roles, have towards LGBTQ students opens up the possibility of deeper conversations and proactive, innovative support services in the future.

Hawkins et al. (2017, p. 316–327) detail conversations among professionals in health sciences librarianship about the needs of LGBTQ patrons. The authors echo the importance of understanding the terminology, and of developing standard cultural competencies in serving LGBTQ users. An example of this in action is hosting safe space training. Safe space training workshops provide information on LGBTQ+ culture and engage in identifying and avoiding microaggressions in speech or actions.

Another example of the importance of providing resources that support and celebrate underrepresented communities is creating helpful library guides. Kohout-Tailor and Klar (2021, p. 173) recommend creating multiple guides and working with various partners on campus. They wrote, “once you identified areas that may need support, creating or growing a partnership to make sure the resources truly meet a need is next. Communicate with colleagues both within and outside of your library or institution to make connections and start the conversation of how best the library can provide resources that support EDI programs or initiatives.” They offer a starting point on how to begin a form of outreach.

Editor and Student Engagement Librarian at the University of Tennessee in Knoxville, Zoe Bastone (2020, p. 24) explains, “that while there is a wide agreement that outreach is a necessary component in an academic library’s operations, there is a gap in the literature regarding how to create outreach programs that are efficient and effective and can account for unexpected additions to the outreach program.” This article helps fill that gap by discussing the programming of a small academic library. The outreach examined in this article developed through collaborations between universities, across campus, and within the community. However, as mentioned, there is a lack of previous research in academic libraries on building LGBTQ+ outreach events within a case study format. For example, while the authors searched in the database LISTA, “case study” and “outreach programs or outreach services” brought up only 90 hits between 1978 and 2022; 42 included academic libraries, and none included the words “queer or LGBTQ or gay or LGBT or lesbian or homosexual or transgender.” The authors will focus intensely on outreach to develop strong outreach campaigns for underserved groups. This is especially important given the continued growth of minority enrollment in higher education (Puente et. al, 2009, p. 30). The article will reveal the methods of adaptability that the committee used to meet the changing needs of their outreach program over five years and during a world pandemic.

Research Questions

The research questions for this study were as follows:

RQ1. How to start an outreach initiative?

RQ2. How to continue to grow an annual program?

RQ3. How to react during a period of dramatic upheaval and change?

Data Collection

Methodology.

There is published research that quantifies the development, and even influence, of library outreach on student and community involvement with their academic library, as academic libraries commonly host events to attract students and the surrounding community. These events can provide opportunities for interaction, generate informative discussion, and familiarize students with the library’s services. Yin (2017, p. 5) describes qualitative case study methodology as: “Whatever the field of interest, the distinctive need for case studies arises out of the desire to understand complex social phenomena. Case studies allow you to focus in-depth on a case and to retain a holistic and real-world perspective.” This article presents a checklist of the four critical elements of a successful outreach program. The checklist includes strategic vision and planning, program development and implementation, community outreach, and expanding outreach audiences. The objective of this article is to provide academic libraries and their staff with practical application of this checklist by linking all its four elements with the authors’ experiences.

The definition of the case study evolved through the work of the library committee, which works tirelessly to conduct an event each year. Collaboration between the authors began during the Summer of 2017. Shortly after, the authors met to work together and—over an extended period—shared similar thoughts and feelings in order to understand and analyze the university’s overall climate, where LGBTQ+ issues remained largely unaddressed. This unified desire for outreach grew into a huge show of celebration of LGBTQ+ people that also provided exploratory data-collecting possibilities. The resulting committee included university staff, faculty, and students. The committee later incorporated more help from community volunteers as well. Officially, the committee was first called to order by two library staff members and three university faculty members. The group’s strategic vision was to grow campus LGBTQ+ support and engagement and then have the student organizations take the eventual reigns. This committee never saw themselves as the sole owners of OkraOut, but as developers and supporters of the campus need. They built the programs and structure. The committee began meeting at the beginning of each Fall semester. For the first couple of years, weekly meetings were held in the library up until the event occurred in October. After the event, a meeting would be held to review and start plans for next year. As the COVID-19 pandemic began, the resulting committee meetings were held through email and occasional Zoom meetings.

Delta State University’s campus is a small area with close collaborations. Because of that, library administration, as well as other departmental administrations, were updated frequently on the developments; this event planning committee would not have been able to accomplish its visions without their support. Committee members were also provided time for the meetings and events. The committee itself had to be built up before building OkraOut. At first, the committee members were similar-minded individuals that were supportive of each other and known to each other through different outreach programs. Then, after the event began to be known throughout campus as an annual event, more volunteers and students reached out. The effort led to the development of a significant LGBTQ and ally network that facilitate future programming and support. This article represents the actualized and envisioned library services for the progressive support of LGBTQ individuals, as described in the following section.

RQ1. How to Start an Outreach Initiative?

Germination Stage

Strategic vision and planning are the first critical elements of a successful outreach program. The beginning of the growing stage of okra is called the germination stage, in which the seeds will produce some roots and leaves. Following this metaphor, the OkraOut program first sprouted in October 2017. That year, Chase Ollis published an article through the Association of College and Research Libraries (2017) calling for libraries to “Standing Up for Our Communities.” He wrote:

Faced with a dramatic policy shift that contradicts the core values of libraries, an awakening of hate groups empowered by the shift, and the perpetual suspense that accompanies uncertain times, librarians are rising to the challenge of maintaining safe spaces in America’s libraries by advocating for intellectual freedom and declaring that libraries are for everyone.

Ollis illustrated the charge for engagement in communities. While providing access to LGBTQ+ resources is essential, providing a diverse, inclusive space and educational opportunities is crucial.

In October 2017, the university held the first LGBTQ+ History Month Celebration with an inaugural event called initially OkraOut Front. The event’s purpose was to bring together the university students, faculty, staff, and local community members who support and advocate for an inclusive and diverse society. More importantly, the event ensured that queer people on campus and in the local community were being represented and recognized with access to diverse collections and services—a priority for the library. The idea for the OkraOut Front library outreach event first appeared in June 2017 after one of the authors posted a picture promoting the academic library’s pride book display. The image received a lot of interest on social media, and the authors began further engaging with students who had revealed that they were queer. The positive engagement revealed a need as little was held to support queer people on campus and locally.

The first step in growing OkraOut was to find collaborators. Both authors held staff positions at the library at the time but were supported by the library’s administration to pursue various campus and community engagements. Identifying nonprofit organizations and LGBTQ+ allies was time-consuming, but not impossible. A partnership with the academic library on the university’s campus and statewide organizations was essential to the development of the event. Locally, there were a few campus and community organizations, including the University’s Quality Enhancement Plan, Diversity, Equity, and Inclusion Committee, the Gender and Sexuality Alliance student organization, and the Mississippi Department of Health with its HIV/AIDS chapter. Most organizations supporting diversity were based in Jackson, a two-hour drive from campus. These groups included the Human Rights Campaign of Mississippi and Free Mom Hugs of Mississippi. The authors also sought assistance from other university organizations. For example, in the program’s first two years, the committee collaborated with the Sarah Isom Center for Women and Gender Studies, as well as the Center for Inclusion and Cross-Cultural Engagement at the University of Mississippi. This partnership helped extend awareness and provided additional educational and planning tips for the OkraOut committee. The University of Mississippi’s organizations had more funding and experience in offering diverse programs. Such support watered OkraOut’s roots. The authors conducted research and held conversations. A small committee began to grow, and their first act was to plan the first pride event for the university.

On October fifth, 2017, the OkraOut outreach celebration was held a week before National Coming Out Day. National Coming Out Day is an annual LGBT+ awareness day observed on October eleventh to support lesbian, gay, bisexual, and transgender people in “coming out of the closet.” The event was advertised in the first-year seminar courses, campus publicity, via social media platforms (Facebook), among staff and faculty members, and printed materials were distributed around campus and placed on community boards. The side of the library’s lawn stood as a stage where student bands, poets, and ensembles performed music written or composed by queer individuals throughout history. The Delta State University’s marching band opened the event by playing “Over the Rainbow.” The authors prepared an LGBTQ+ movement history timeline to provide more information, resources, and facts.

The program included 114 RSVPs and was free, open to the public, and family-friendly. The event educated the audience about the use of pronouns, acknowledged Mississippi organizations that support LGBTQ+ people, illustrated how to find help or answers, and identified persons that would provide support and assistance on campus and in the state. This first event was seen as a success. With that in mind, the committee and the library administration decided that the program should continue to grow and become an annual library outreach event. The first crucial step of starting an outreach initiative was deemed a success by the feedback from participants. For example, a community member wrote on Facebook:

God sent you here for a reason, and keep doing great things so that all people can feel love and acceptance!!! You are amazing and I can say that even though we have never met!!! I feel compelled to share my story of my family and the struggles we have faced Much Love to you and yours (Anonymous, community user, 2017).

Further, a student commented, “Thank you so much for sharing! This is amazing” (Anonymous, DSU student, 2017), and a faculty member added, “Great job tonight! Thank you for your efforts! My class enjoyed!” (Anonymous, DSU Faculty, 2017).

The second step of a successful outreach program is the development and implementation stage. Once ideas are promising, it is important to continue to repeat and build upon them. In 2018 sprouting occurred again, and the OkraOut committee met to repeat the successful library outreach event. Many of the setup props as the previous year were used again. To continue the music essence, “Vogue” was settled as the theme of the 2018 LGBTQ+ History celebration.

The guest speaker in 2018 was someone whom one of the authors befriended the previous year when researching OkraOut, Dr. Jaime Harker. She spoke at the event and again the next day at Delta State University’s art gallery about her book, The Lesbian South . Before the event, the committee advertised a Google form that allowed patrons to share their personal coming out stories, including the option of remaining anonymous or releasing their name. The stories were then printed out and shared at the outreach event. Later, the university’s archives and museum archived the responses with permission.

At the end of the 2018 event, a local dance teacher was invited to teach classic vogue dance moves, and then the crowd could take part in voguing down the stage. The university’s then president and vice president of student affairs led the voguing. Students, faculty, and families took part in the large dance party. The dancing crowd was large, growing from around 100 to 200 participants from the previous year. Officially on the OkraOut Facebook website, 129 people RSVPed. A student later commented on the site, “love that they included an ally flag” (Anonymous, DSU student, 2018). A faculty member wrote, “Love this!” (Anonymous, DSU faculty, 2018). After the event was officially over, an open mic night for poetry was held down the street at a local coffee shop.

RQ2. How to Continue to Grow an Annual Program?

Young Seedling Stage

OkraOut saw a change in its direction and size as it further bloomed in 2019. The third step of a successful outreach program is the inclusion of community outreach; thus, in 2019 the OkraOut committee sought entertainers from outside the university. In a bit of foreshadowing, Liam Stack had written, earlier that year, a piece in the New York Times titled, “Drag Queen Story Hour Continues Its Reign at Libraries, Despite Backlash” (2019). He wrote on the rise of Drag Queen Story hours throughout the country, even in areas with discriminatory laws. Stack (2019) noted that:

Drag performers regularly entertain children at libraries and community centers in progressive enclaves like New York and Los Angeles as well as red-state towns like Juneau, Alaska, and Lincoln, Neb….Melissa Bean, who started the Middle Tennessee chapter of Drag Queen Story Hour, agreed. Unfortunately, backlash often takes place as well. For example, two libraries in central Ohio canceled drag events after receiving what the library council said were “hostile threats.” Stack poignantly added in the interview a quote from Ms. Bean, the statistics of the L.G.B.T. community and how many people might be in it don’t change because of your ZIP code and your population density, said Ms. Bean, who lives near Sparta, population 5,029, There are L.G.B.T. people here who need us.

At OkraOut’s first committee meeting of the year, members agreed that 2019’s outreach event should be more extensive, including multiple activities and outreach formats, as the previous two years had been so successful. Inspiration for a theme came from the New York Public Library, which held a program called Love & Resistance: Stonewall 50, referring to the Stonewall Uprising—a series of protests by members of the gay community in response to a police raid at the Stonewall Inn in New York City—in 1969. Those protests have become a symbol of resistance to social and political discrimination.

With that in mind, the theme emerged as OkraOut Resistance and History: An event to celebrate the 50th Anniversary of the Stonewall Uprising, a milestone in the LGBTQ+ History movement. To celebrate in a larger fashion, the committee enthusiastically chose to host the first-ever drag show on campus. The committee utilized social media, including dressing up in unicorn costumes, printing flyers, creating videos, and advertising on the university’s marquee. This event was free and family-friendly. The music, costumes, and performances fit a family-friendly event. A rainbow cake and cupcakes were shared, and various campus and equality organizations, such as the Human Rights Campaign, MomHugs.org, and My Brother’s Keeper, hosted tables with provided information on resources.

Because of backlash to the wording of being family-friendly and some negative messages on social media in response to a drag show, the location was moved from the library’s lawn to a theater on campus for easier security. Those security concerns were brought to the attention of the campus police. Although they were found unwarranted, the event has moved indoors to monitor entrances better. This proved helpful as, according to the RSVPs on the group’s webpage, the committee was expecting at least 133 people. However, the event had its largest turnout, and the performance theater—which has 350 seats—was standing room only.

The OkraOut committee experienced support from faculty, staff, students, and community members. Before the event, community members posted support on social media by writing, “Y’all come out and support Okra Out! this Thursday. Bring your kids. Show them that the diversity of humans is beautiful. And if you disagree with that, keep your hatefulness to yourself” (Anonymous, Community member A, 2019). After the show, many community members reached out with stories such as the following:

I couldn’t believe people I know and thought I liked were saying horrible things. I lost so much respect for many people bc of all of that I’m proud dsu is doing this and proud people like you guys are here to help They talk about bullies in schools where they are the bullies of this town in my opinion. It’s so sad If there is ever a time for others to learn I’ll be happy to share how my own family learned to accept my trans brother And there is way way more to the story (Anonymous, Community member B, 2019).In response to the first drag show on campus, attendees posted, “This was our 3rd year to go to Okra Out as a family. It was such an amazing event, as usual, and our family and friends had a ball!” (Anonymous, drag show attendee A, 2019) and, “We had so much fun at the 3rd Okra Out! The kids absolutely loved the first-ever drag show at DSU” (Anonymous, drag show attendee B, 2019).

Before the drag show, a faculty member held an OkraOut Pride yoga session outside the theater. Also, an exhibit of the national campaign from Zeiss Lenses Americas shared different interpretations of love in the theater’s lobby. With the permission of the local photographer, Rory Doyle, his photographs of local members of the LGBTQIA+ community—including Delta State University professors and students—were also displayed (with the subjects’ permission).

The OkraOut committee 2019 produced a series of zines for the first time in 2019. Three zines were created and published with information submitted by students, faculty, staff, and community members. The authors and artists included personal stories, poetry, artwork, and words of encouragement. They were promoted by the Language and Literature department. Once printed, student volunteers distributed the zines and left them throughout the student union and other sitting locations throughout campus. Two years before, Kate Kitchens, an academic reference and instruction librarian, presented the idea of zines at the Iowa Library Association conference in a presentation called “Moving Beyond Queer Acceptance: Creating a New Community Culture” (2017). This presentation focused on their guide, “Librarian Field Notes,” for librarians who wanted to provide services to support their queer patrons but did not know where to start. Using zines was an avenue that offered a way to understand queer communities and their unique needs better. During the first year zines were printed in a faculty member’s office, so they were in black and white. Student volunteers used crayons to color in part of the title page. Later, when more funds were available, the committee could print the zines in color. The OkraOut zines became an essential and creative asset to the outreach events and continue today.

RQ3. How to React during a Period of Dramatic Upheaval and Change?

Flowering During Frosting Stage

The fourth element in a successful outreach initiative is to continue to expand the outreach audience. This aspect was even more necessary in the fourth year of OkraOut. Sometimes growth is difficult and must be pushed through, and the year 2020 certainly taught everyone a lesson in resilience. Association of College & Research Libraries’ (ACRL) Standards for Distance Learning Library Services state,

All students, faculty members, administrators, staff members, or any other members of an institution of higher education are entitled to the library services and resources of that institution, including direct communication with the appropriate library personnel, regardless of where they are physically located in relation to the campus; where they attend class with regard to the institution’s main campus; or the modality by which they take courses. Academic libraries must, therefore, meet the information and research needs of all these constituents, wherever they may be. In 2020, every student became a distance learning student due to the pandemic of COVID-19, and the OkraOut committee had to decide how to provide services and outreach safely. Because OkraOut has evolved over the past few years into a multifaceted and flexible program, it could adapt during the COVID-19 pandemic.

Greenblatt (2001) argues that the LGBTQ community has been transformed with the help of the Internet and social media. Those outlets contribute many opportunities for academic libraries to bring value to LGBTQ students in terms of information services, programming, collections, and much more. Many projects were fast-tracked to meet this unique need, including creating a webpage to host our events and present our mission statement and other information. The Systems librarian built an OkraOut online archive ( https://www.deltastate.edu/library/okra-out/ ) to collect and make accessible photographs, personal stories, and additional information about the events of 2020 and previous years. To further spread the program’s outreach and protect the collected stories, the committee contacted the Invisible Histories Project and sent OkraOut information to the Library of Congress for their LGBTQ+ archives.

By October 2020, the committee felt comfortable hosting one in-person event within federal guidelines. A Pride walk on the campus quad, a grassy area at the Delta State University entrance, was held. The event occurred outside, and there was enough room for social distancing while wearing masks. Pride packs were presented to the first 100 attendees. They contained stickers, flags with a tutorial on making them a face mask, zines, and LGBTQ+ fast facts. At the start of the walk, representation flags were displayed, and volunteers were encouraged to write stories and create artwork for future zines.

OkraOut grew in 2020 to be more than just the celebration on or around National Coming Out Day. It was a whole month of celebration, and outreach and virtual events were held throughout October. Through the new webpage, the library shared a drag queen story time of a fabulous reading of Mariah Carey’s “All I Want for Christmas.” The webpage also provided a link to the screening of the independent film Gay Chorus Deep South and a zoom pride yoga session. The site recorded 93 views that month.

Because of the program’s growth, the committee also wanted to help the LGBTQ+ student organization on campus and looked for ways to increase visibility. In 2020, committee members applied for a grant with the L.G.B.T.Q. Fund of Mississippi to do just that. OkraOut was awarded a grant of $3,500, which was used for safe space training on campus for faculty, staff, and students and to help establish the student organization.

The committee sought to find a medium to meet the needs of the students on and off campus, and to continue the trend of increasing the number of events each year. To meet this challenge, they ensured an equal number of virtual events and in-person events in case of cancellations because of COVID-19 case spikes. OkraOut hoped for more in-person events in 2021, but the reality of the COVID-19 pandemic continued to prove challenging. Nonetheless, 2021’s theme was chosen as LOVE IS LOVE, and throughout October, a LOVE is LOVE Wall was present on the first floor of the Student Union. This poignant but straightforward theme reflected the past two years of trauma felt by the unceasing pandemic.

With the support of the Office of Student Life, Delta State University’s Diversity, Equity, and Inclusion committee, and the academic library, OkraOut held an adult drag show and fundraiser for the student pride organization at a local restaurant. Then a Rainbow Run on the campus’s quad and a family-friendly drag show were held on campus. After Delta State University’s second drag show, the audience was welcomed to visit tables with representatives and information about supporting health organizations. One of the article’s authors also created the university’s first Diversity, Equity, and Inclusion library guide in honor of OkraOut. This library guide quickly became the most viewed LibGuide for the Roberts-LaForge Library. As of September 2022, the DEI library guide has been viewed 1,144 times. The following closest number of views is the Dual Credit LibGuide, with 539 views.

Academic presentations were also held, one in-person and one virtually. In a first collaboration with the University of Memphis, author Dr. Phillip Gordon was invited to both campuses to discuss his book, Gay Faulkner , and present a lecture on acknowledging the Queer South. While Delta State University did have a moderately well-attended in-person event, the University of Memphis used live stream technology and witnessed a more significant online presence than the in-person event. OkraOut’s virtual event included a presentation on “Teaching, Learning, and Living the Queer South” by Dr. David Baylis, a former faculty member. The online components were viewed 389 times.

With the grant funds described above, the Diversity, Equity, and Inclusion Committee Chair organized virtual Safe Space training workshops throughout October. It worked with OkraOut committee members to help reorganize the Pride student organization at the university. The Pride student organization now includes 40 members, representing 1.64 percent of the student body.

The committee did recognize the difficulty of having lower on-campus numbers than in previous years. Nonetheless, during Homecoming—the last week of October—OkraOut had a float in the university’s parade for the first time; the float increased visibility on campus and in the community. Responses to that year’s OkraOut effort on social media included a comment from a community member that, “A colorful time was had by all,” and a student posted, “Thank you for making this world a better and a little bit safer place!”

Plans for the Future of the Program, Okra Pod Bearing Stage

Feedback on OkraOut’s outreach events was essential to gather because a few weeks after each event, we held a post-event committee meeting to determine improvements for the next year, and to celebrate our efforts to advocate for diversity and inclusion. Even with the trials of the last few years, the OkraOut committee has retained its excitement and vigor. The committee has only grown and continued to bring in individuals from all university areas. They all look forward to the future of the outreach programs. Most importantly, they plan to continue and strengthen collaborations with other higher education and nonprofit institutions. Building those connections and networking will boost the outreach possibilities. Of course, there is also a need to better utilize technology for virtual attendance in this new era.

Larger ideas include creating a statement about the commitment to diversity and inclusion, publishing that statement on our library site, and possibly planning monthly events instead of only holding in one month to encourage further engagement. More previously discussed, centralized events include having a gay mass in partnership with the local Episcopal Church, and creating a queer and trans-community closet with the university’s Career Services. Currently, the committee is also looking at grants to use within the greater community. Again, these events rely on teamwork and the relationships built from them. The OkraOut program is sprouting new growths every year. The committee, which began with one event in 2017 has, five years later, hosted nine events throughout the month of October.

In repeating a statement from the methodology, this unified hope for outreach grew into a vast celebration of LGBTQ+ people, and provided exploratory data-collecting possibilities.

Through starting an outreach program, the authors realized that initiative and collaboration take time to implement successfully. However, the first step for librarians and staff is to recognize the power of library promotion and embrace the issues of their community. Services, resources, and materials are only small parts of what makes an academic library valuable to its campus community. The librarians and staff also have a one-on-one impact on the students and community. Over the past five years, OkraOut’s committee has grown from five members to sixteen members, and has been chaired by a library staff member in four out of five years. This growth exhibits the volunteer spirit of the committee members.

Also, during that time, the committee witnessed the attendance of events swell from 100 people to over 350 people attending, with an understandable dip to 93 in 2020. (As seen in Figure 1.)

The main takeaway from that growth is that a library’s marketing, outreach, and promotion should illustrate that the library cares and that it, with its partnerships, takes service seriously. This also exhibits the support and the resulting need for the outreach initiative. As illustrated, libraries, especially academic libraries, can and should play an integral role in helping LGBTQ+ students, faculty, and staff feels seen. Support should spread further than just an LGBTQ+ collection in the library. The Library Bill of Rights puts it best: “To that end, libraries and library workers should embrace equity, diversity, and inclusion in everything that they do.” With the spread of outreach and the audience growth, Robert-LaForge Library’s staff members have taken an active role in educating the community by instructing Safe Space sessions and utilizing grant funding. Safe Space training sessions have become a valid workshop on campus. Faculty, staff, and students are welcome to attend these semesterly sessions to learn more about pronouns and stereotypes to reduce the often unwelcoming, and biased, environment that LGBTQ+ people navigate daily. Ally connections are strengthened, and students will be aware that places of shelter are needed. A comment shared by a student after the fifth OkraOut expressed that it was truly appreciated.

This article concludes with the hope that the audience continues to give visibility, celebrate, educate, support marginalized communities, and identify ways to get engaged and advocate for queer people on campus and in their communities. The efforts can be small or large, but the action should remain. OkraOut was planned to be educational, festive, and entertaining while also bringing to the table essential questions about diversity and inclusion, thus showing support, and giving visibility to the queer people and allies on campus, and in the community. By spreading the idea that the library was an institution that guards and supports everyone’s right to access knowledge and culture and advocates for all patrons, OkraOut positioned the library as a safe space. This article exhibits small and large efforts, but the essential fact remains that the ideas were planted, watered with support, and that the outreach began to grow.

Further Impact and Studies

Despite some improving social circumstances for some LGBTQ+ people, much progress still needs to be made. This article, in particular, can be helpful to libraries, librarians, and universities in recognizing the required progress. Librarians may realize that they need more training on LGBTQ+ terminology, culture, and information resources. Library administrators may find this paper useful in identifying connections between librarian outreach goals and the larger vision of library services.

Beyond the library, university and student affairs administrators may find this paper interesting as it emphasizes the role of collaboration. It also provides a valuable example of how the library can partner in broader university outreach initiatives and that wide-reaching impact can be felt with any outreach efforts. Ultimately, research will be needed to illustrate in more detail how well librarians address LGBTQ+ needs within their universities and communities and the role of academic libraries in those outreach initiatives.

Acknowledgments

We wish to acknowledge and thank those who helped grow OkraOut. This was a collaborative effort within the library, the institution, the community, and the state. The following is just a snapshot of organizations and people who made this outreach event possible:

Okra Out Planning Committee | DSU Library Services Administration | DSU Department of Music | DSU Department of Languages and Literature | DSU Diversity, Equity, and Inclusion Committee | DSU Pride Alliance | DSU Office of Student Affairs | Delta Music Institute | Campaign for Southern Equality | DSU Department of Art | DSU Division of Social Sciences and History | DSU Canterbury Ministry | DSU Office of Student Life | DSU Police Department | Human Rights Campaign of MS |  Free Mom Hugs of MS | Sarah Isom Center for Women and Gender Studies | Center for Inclusion and Cross-Cultural Engagement at the University of Mississippi |

Dr. David Baylis | Dr. Jaime Harker | Danza Locke Reifers | Kayla Selby | Michelle E. Johansen | Brandy N. Collins | Jonathan Szot | Dr. Karen Fosheim | Robin Webb | Brittany K. Mann | Haley B. Scroggins | Holly E. Senter | Elizabeth C. Swindle | Charles T. Salazar | Rochelle Owsley | Maia Elgin-Wegmann | Maya M. McGinnis | Dr. William J. Ash-Houchen | Dr. Kelsey Evans-Amalu | Dr. Melanie R. Anderson | Sykina Butts | Mr. Bill LaForge and Mrs. Nancy LaForge | Jeff Slagell | Dr. Vernell Bennett-Fairs | Dr. Jamie Dahman | Denisha Cook | Dr. Jacqueline Goldman | Kara Goldman | Lynne Lambdin | Celeste ArgiFlex | Tiko Jones | Gunter McCourt | Aubrey Ombre | Zoey Adams | Iris Lefluer | 

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* Afton Fawn Ussery is Instructional and Access Services Librarian at Delta State University, email: [email protected] ; Sofiya Petrova Dahman is Resource Delivery/ILL Librarian at University of Memphis, email: [email protected] . ©2024 Afton Fawn Ussery and Sofiya Petrova Dahman, Attribution-NonCommercial ( https://creativecommons.org/licenses/by-nc/4.0/ ) CC BY-NC.

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