Patient Reported Determinants of Health: A Qualitative Analysis of Veterans with Chronic Obstructive Pulmonary Disease

Abstract

Although COPD is a common disorder of veterans who receive care from the Veterans Healthcare Administration (VHA), the perceptions of veterans with COPD about their disease, its effects on their lives, and their interactions with the VHA have not been determined. Utilizing qualitative methodology, we conducted focus groups of veterans with COPD at the Cincinnati VA Medical Center. Participants were selected by systematic sampling from the top quintile of veterans stratified by the cost of healthcare utilization related to a primary diagnosis of COPD and grouped by age and use of supplemental oxygen. All 42 participants were male and had a mean age of 65 years. Analysis of the focus group transcripts demonstrated five major themes: 1) Physical and Functional Limitations: work and employment constraints, recreation restrictions, limits on activities of daily living, reduced sexuality, concerns about housing and finances, and physical symptoms; 2) Restricted Social Interactions/Altered Social Networks: altered relationships with friends and family and reliance upon family and care givers; 3) Emotional Effects: reduced self-worth, vulnerability, depression, perseverance and adaptation, hopelessness, fear, pride, and lack of control; 4) Limitations in the Understanding of COPD: unawareness of diagnosis, triggers and reaction to disease manifestations, COPD management; and 5) Complex Healthcare Interactions. COPD pervasively and extensively affects all aspects of veterans’ lives and causes significant consequences for their care and management.

Keywords: :

• Chronic Obstructive Pulmonary Disease
• veteran
• patient determinants of health

Introduction

Chronic obstructive pulmonary disease (COPD) is a progressive debilitating lung disorder that is characterized by nonreversible airflow limitation. At the Cincinnati Veteran's Administration Medical Center (VAMC), the prevalence of COPD is estimated to be 33–43% and COPD is significantly under-diagnosed and misdiagnosed (1). In a 1996–2001 utilization review, 19% of men and 17% of women who received care from the Veterans Healthcare Administration (VHA) were diagnosed with COPD and COPD was the fourth-most-common discharge diagnosis at VA hospitals (2). Further, COPD care is a major expense; the VHA spent an estimated $5.5 billion to care for approximately 969,000 Veterans with COPD in 2004 (3). Thus, COPD is a common disorder of Veterans that causes significant morbidity and mortality and its treatment is a major expense within the VHA.

The traditional approach to COPD management has been the utilization of biomedical pathophysiology to develop medication based therapeutic strategies illustrated by the GOLD and VHA/Department of Defense (DOD) treatment COPD guidelines (4,5). Most COPD research has centered on the pharmacologic therapy of COPD and there have been few investigations of patients’ perceived and actual needs. Miravitlles and colleagues (6) showed that breathlessness was the most frequent symptom during exacerbations (78%) and many patients (54%) feared that COPD would cripple or kill them. Quicker symptom relief and longer duration between exacerbations were the most desired health improvements.

Deficits have been identified in patients’ knowledge, understanding, and management of their disease, a need for a fuller understanding of COPD for themselves and their families preferably at the time of diagnosis, and better therapy for anxiety and frustration to improve disease self-management (7,8). An international study found that individuals of working age (45–67 years old) diagnosed with COPD report significant reductions in personal quality of life, diminished career and work achievements, and increased healthcare utilization (9). In a study by Pinnock and colleagues (10), patients with COPD describe an insidious adoption of COPD driven lifestyle changes due to physical and emotional derangements creating an altered way of life rather than a life with an illness.

Data from the Lung Information Needs Questionnaire (LINQ) (11,12) showed that there were significant deficits identified in patients’ knowledge about COPD, its treatment, and need for adherence with therapy (12). Therein, 67% of COPD patients had incorrect knowledge about their prognosis, 36% did not know when to call an ambulance, 8% of smokers said that no one had ever told them to quit smoking. A telephone survey of 389 Canadians with COPD revealed significant gaps in patients’ knowledge about COPD causes and management, only 33% had been told how to prevent COPD exacerbations, and few had seen a lung health educator (13). A survey of individuals with COPD and physicians in the US revealed that both groups were confused about the diagnosis and management of COPD with underutilization of pulmonary rehabilitation (14).

Theoretical models of patient-related interventions in COPD care have been developed and suggest that knowledge, psychosocial mediators, self-efficacy, and behavior are predictors of outcomes in COPD (15). When this model was tested in 278 patients with mild-to-moderate COPD, physical activity was the most significant predictor of all clinical and functional outcomes. Thus, patient identified factors do correlate with clinical measures but this approach has not been applied to the development of a clinical COPD management program.

Although COPD is a common disorder of veterans who receive care from the Veterans Healthcare Administration (VHA), veterans’ perceptions of COPD, its effects on their lives, and their interactions with the VHA have not been determined. Utilizing qualitative methodology, we determined veterans’ perceptions about COPD, the effect of COPD on their health, and their healthcare needs to understand COPD from the veteran's perspective and to inform development of a patient centered COPD management program.

Methods

Study design

We queried the VHA Decision Support System for the names of all veterans with a diagnosis of COPD served at the Cincinnati VAMC and calculated their individual VHA healthcare costs related to a diagnosis of COPD. For the veterans with COPD, there were 9,312 healthcare encounters that generated $19.7M in healthcare costs. All veterans with COPD were sorted by their total VHA COPD healthcare costs. To study the group of veterans with the greatest utilization of VHA healthcare, we selected the top quintile of veterans with the greatest VHA COPD healthcare costs as the study population.

The study team included a respiratory therapist/study coordinator, an advanced nurse practitioner/educator, a social scientist trained and experienced in the conduct and analysis of focus groups, and a pulmonologist. A qualitative approach was selected as it allowed individuals with COPD to identify and describe in their own words the most significant issues and challenges facing them. This study was approved by the University of Cincinnati Institutional Review Board and the Cincinnati VAMC Research and Development Committee.

Study population/Data collection

Participants were selected by systematically selecting every fourth patient within the study population and grouped by both age (≤60 or >60 years old) and the use of supplemental oxygen to create four homogenous subpopulations. Selected patients were called and informed about the study and the focus groups; if the patient declined participation, the next patient on the list was called until 12–14 subjects agreed to participate. Between 6 and 10 participants attended each focus group which lasted approximately 90 minutes and was held in a private conference room. For each focus group, all participants were from a single homogeneous subpopulation to enhance comfort and openness (16).

All participants completed a demographic questionnaire at the start of the session (Appendix 1). A semi-structured question guide developed by the multi-disciplinary research team was used to direct the discussion (Appendix 2). The guide included a core set of open-ended questions as well as specific prompts to facilitate and direct the discussion. The moderator (S.N.S) used structured probes and follow-up questions to clarify and expand the discussion as well as to explore the context of the responses. The semi-structured questions and the interactive group format allowed the participants to elaborate on their personal experiences and engage in discussion with one another on issues that may not have been anticipated by the research team.

Topics explored in the question guide included: respiratory symptoms and triggers, impact on day-to-day life, self-management, and management and delivery of care. The question guide was modified slightly in an iterative fashion adding new issues raised by participants as the focus groups progressed. At the conclusion of the seventh focus group, the research team determined by consensus that no new additional information was being provided by participants (thematic saturation) and recruitment for and conduct of the focus groups was concluded (17). The proceedings were audiorecorded and transcribed verbatim. Each transcript was reviewed and edited for accuracy.

Data analysis

Each member of the research team independently read the transcripts. Using an inductive approach whereby the research team did not rely upon a priori hypotheses or constructs (18), the researchers then met as a group and began to identify concepts and categories from the first few transcripts. During this initial phase of coding and data interpretation, emerging themes were interpreted, defined and labeled by group discussion, and organized in a preliminary codebook. After coding two transcripts, the codebook was revised (new codes added and others reconfigured) (Appendix 3). Themes were universal and there were no differences between the four homogeneous subpopulations of veterans with COPD.

During the second phase of analysis, the four investigators independently applied the revised codes to participant responses in each of the 7 transcripts. The research team then met weekly and collectively reviewed the coding of each transcript, clarified codes as needed and reconciled differences by consensus. All coding decisions were recorded in an electronic data base. This collaborative multi-disciplinary approach permitted analysis through consensus, preventing the disciplinary biases of a single investigator from unduly influencing the interpretation of the findings, thereby achieving investigator triangulation (18). The most representative verbatim quotes for each theme are presented in the results.

Results

Study population

A total of 42 men participated in 7 focus groups. Participant demographics are presented in Table 1. All subjects were ever smokers and over one third were current smokers at the time of the focus groups. Respiratory medication use by the study participants is presented in Table 2. Only 2 subjects stated that they were not receiving any treatment for their COPD and most patients were receiving more than one therapy. To corroborate healthcare utilization, subjects reported all emergency room visits and hospitalizations for respiratory disorders over the year prior to the focus group (Table 3). Slightly greater than two thirds of the participants reported either at least one emergency department visit or hospitalization in the prior 12 months. They used non-VHA healthcare services for approximately one third of these encounters.

Table 1.  Focus group participant demographics

Age (years)
Mean ± SEM	64.6 ± 1.4
Median (range)	62.5 (48–88)
Race n (%)
White	30 (71%)
African American	11 (26%)
NR	1 (2%)
Marital Status n (%)
Married	17 (40%)
Single	8 (19%)
Divorced	8 (19%)
Widowed	5 (12%)
NM LSO	3 (7%)
NR	1 (2%)
Living Situation n (%)
With S/P	19 (45%)
Alone	14 (33%)
With extended family	7 (17%)
With caregiver	1 (2%)
With S/P and extended family	1 (2%)
Ever Smoker n(%)	42 (100%)
Smoking Pack-Years
Mean ± SEM	40.9 ± 1.7
Median (range)	40.0 (5–73)
Packs Per Day
Mean ± SEM	1.6 + 0.1
Median (range)	1.3 (0.5–3.5)
Current Smoking Status (n = 40)
Active smoker	15 (36%)
Quit	25 (60%)
NR	2 (5%)
Years Since Quitting
Mean ± SEM	8.6 ± 1.9
Median (range)	4.0 (0.03–3.0)
Other Products Smoked n (%)
Cigars	3 (7%)
Pipe	3 (7%)
Marijuana	2 (5%)

Abbreviations:

NR-no response.

NM LSO-not married, living with significant other.

With S/P-with spouse/partner.

Mean±SEM-mean±standard error of the mean.

Table 2.  Respiratory medications

Medicine	n (%)
Albuterol	31 (76%)
Formoterol	16 (39%)
Ipratropium	9 (22%)
Tiotropium	14 (34%)
Combivent®	15 (37%)
Mometasone	11 (27%)
Oxygen	20 (49%)
Nebulizer	2 (5%)

Table 3.  Self-reported healthcare utilization in the year prior to the focus group

All Healthcare Received at the VA	39/42 (93%)
At least 1 Respiratory-related ED visit	23/41 (56%)
At least 1 Respiratory-related hospitalization	22/41 (54%)
No Respiratory-related ED visits or hospitalizations	12/41 (29%)
Hospitalizations/person (n = 22)
Total
Mean ± SEM	3.2 ± 0.5
Median (range)	3.0 (1–10)
At VA
Mean ± SEM	2.3 ± 0.5
Median (range)	2.0 (0–10)
At nonVA
Mean ± SEM	0.9 ± 0.3
Median (range)	1.0 (0–5)
ED Visits/person (n = 22)
Total
Mean ± SEM	4.0 ± 0.8
Median (range)	2.5 (1–16)
At VA
Mean ± SEM	2.9 ± 0.5
Median (range)	2.0 (0–10)
At nonVA
Mean ± SEM	1.0 ± 0.4
Median (range)	0 (0–10)

Abbreviations:

VA-Veterans Administration

ED-emergency department

Mean ± SEM-mean ± standard error of the mean.

Focus groups

Analysis of the focus group transcripts identified five major themes: 1) physical and functional limitations, 2) restricted social interactions/altered social networks, 3) emotional effects, 4) limitations in the understanding of COPD, respiratory symptoms and disease management, and 5) complex healthcare interactions. Representative verbatim quotations supporting each theme are presented in the results.

Physical and Functional Limitations

Nearly all subjects noted the effect of respiratory symptoms such as cough, phlegm production, or wheezing on their daily lives and their interactions with family members and friends.

Thinking that you're dying that one night when you can't breathe. .. It's like somebody's got a bag over your head and you wake up gasping for air and you think, “Well this is it.”

I was a pretty active guy and now I get to coughing and it's like I can't get my breath at all. Like something shuts down my chest.

COPD had comprehensive, protean effects on the lives of veterans with COPD including changes in employment, social, and recreational opportunities, altered activities of daily living, reduced sexuality, and financial difficulties. Many of the subjects had reduced or stopped working due to breathlessness or other respiratory symptoms.

I'd love to be able to go back to work myself, they don't have jobs for people carrying oxygen tanks.

I know I used to lay 350 blocks a day and now I'd be lucky if I can do 2. (laughter). .. contractors know me from those jobs and they'll ask me “What's wrong with you?” It's kinda embarrassing ya know what I mean.

They were unable to maintain jobs that required strenuous exertion and either entered more sedentary jobs or exited the workforce. Recreational activities including hobbies such as fishing, attending sports events, or gardening were significantly reduced due to respiratory symptoms. Participants describe conducting a mental physical activity calculus—computing the exertion and related logistics involved in attending social/recreational events: walking distance, presence of crowds, length of event, weather, to determine whether to undertake these activities.

I've done away with all my flower beds, I couldn't do it no more.

I been very active my whole life just about. Marines, I always played basketball, football. tennis, racketball, I mean my quality of life [now] has dropped down to zero. .. I feel like I'm just living. Just eating and using the bathroom, that's it. I have periods when you don't go out the house for 3 or 4 days, and when I do go out. .. it's just to sit outside for maybe an hour and just go back in the house. I really hate living like this, I really do.

[Going with friends to a game.] Football game is only an hour long but it's getting in, getting out, and amongst all that crowd and everything; you're going to need it, your oxygen, and all that walking.

… outside yard work is pretty much non-existent, unless it's riding the lawn mower, and even on a lawn mower you can get winded just steering. .. just wondering if you can catch your breath just sitting on your seat, like “Oh am I gonna make it back or not?”

The heat will wipe you out, you can't do things you used to be able to do. .. my little grandson. .. I can't run and play with him or nothing like that, that bothers you, that bothers me.

I have to plan everything. I mean, like if I go somewhere I got to make sure that I. .. don't have to really walk a lot. That's when it really affects me, is when I'm exerting myself in any way, then my breathing gets really bad.

I ain't trying to rush nowhere. Not even crossing the street, I'm serious, that's the mentality I have, I try not to rush, I can't do it.

Symptoms impaired many individuals’ ability to perform activities of daily living as simple tasks such as showering became a strenuous undertaking.

I don't look forward to stairs. I don't look forward to showers, used to love taking showers, now showers will wear you out.

In addition, many subjects were unable to participate in routine daily activities such as performing household chores.

I'm there all day by myself and my wife is a school teacher ya know, and I can't even go out and sweep the floors or don't do anything during the day. .. I'm contributing nothing to the household. ..

Sexual activity was prohibited or severely impeded and led to marital separation or divorce for some individuals.

To make love is a challenging experience if you can even do it and ya know, that's what broke up my last marriage.

I was a good husband, but for me to make love to my wife was just, certain parts just couldn't. .. because I just get to where I would (deep breath) like I was going to die and she'd just freak out and then she'd just push me away.

… but sexual contacts, it's just like to me, it just like almost committing suicide to. .. breathing's so hard, ya know. ..

I hate coming out and saying this, I really do, but it's true. I'm just trying to get better so I can have some sex.

Many subjects modified or were considering altering their homes or living arrangements to eliminate steps or other impediments that exacerbated their breathlessness whereas others were considering moving in with relatives to eliminate the need to maintain a residence.

When I was in the hospital with pneumonia my wife moved my bedroom which was up on the 2nd floor down into the basement and made that into a bedroom down there. .. everything is down there, shower, television.

Many participants expressed concern about the expenses and difficulty of hiring assistance with home and lawn maintenance, snow removal, and transportation.

I tell you another consideration is the monetary consideration. [If you need to] be calling cabs, ya know, asking people to help,. .., according to the degree of your illness, it could start costing you more money too.

No I can't make a change. Financially ain't no way I can move. I've been looking at it, I said well, ain't no way I can find anybody to really help me to move this stuff.

Restricted Social Interactions/Altered Social Networks

Many of the participants noted a discrepancy between their relatively normal appearance and lack of any physical manifestations of their COPD and their functional incapacity that impeded their relationships with family and friends.

[family members] used to seeing you. .. was active like me, they're used to seeing you don't ask for help, you just go ahead and start doing it. But now you got the COPD it hits us sometimes and you got to ask somebody to do it. .. they wonder what the hell's wrong with you.”

Many restricted or severely limited their social interactions due to fear or apprehension about developing respiratory symptoms or requiring their inhalers in public areas. The use of oxygen was also construed to be a limitation to interacting with others.

I carry my oxygen all the time and I find a lot a people will stay away from you.

Some participants were essentially housebound except for medical visits due to real or perceived constraints on activity whereas others attempted to maintain as many relationships with friends and family as possible even risking worsening of their respiratory symptoms to participate in social events and maintain a sense of normalcy.

You know like, sometimes [COPD] controls me because I know I want to go out and take a nice long walk but I know for me it would be too dangerous.

… the more you give up the more, the more it's [COPD] going to take. If you quit walking upstairs then in a month you're not going to be able to walk upstairs. Ya know what I mean? The more you slow down, the more it's going to make you slow down. You have to push yourself to keep [going], you have to fight for everything you can.

Emotional Effect

The physical limitations and restricted family and social interactions profoundly affected the emotional well being and mental outlook of the veterans with COPD. Many expressed feelings of depression and reductions in self worth and self image.

I feel guilty ‘cuz I can't do some of the housework.

Others felt vulnerable, not only about their health but also for their safety and feared that their public use of oxygen might make them appear weak and an easy target for attack or harassment.

I think with you walking down the street. .. and you got your oxygen. .. You have a chance of being mugged. .. [because] they see weakness.

A recurring theme was a loss of control of breathing; many participants felt that their breathing controlled their lives and that they had to modify what, where, and when they could do things based upon their respiratory symptoms.

Breathing controls you. .. Yes, it does. .. You try to control it, but as soon as you get short of breath it lets you know who's in charge.

This involuntary and seemingly capricious susceptibility to potentially life-threatening breathlessness frustrated many, a few of whom expressed feelings of hopelessness and despondency.

The only appointment or discussion I look forward to is with my maker. There's not too much else. ..

Many veterans experienced increased anxiety related not only to these episodes of shortness of breath but also to the anticipation of future occurrences.

Well, I have to try to self-talk and say ‘just calm down and breathe, calm down and take it in and out,’ try to slow everything down, but I'm really teetering at that point, ya know, between, I don't know what I would do, I'm just saying it's frightening to me.

Some veterans expressed a sense of nostalgic pride reminiscing about what they were able to do before their respiratory symptoms began to limit their activities and their current ability to persevere and maintain the semblance of normalcy despite breathing limitations.

I've adapted to this lifestyle. I've made myself overcome the problem. Adapt and overcome. .. That's what I've done, that's how I live.

Limitations in the Understanding of COPD, Respiratory Symptoms and Disease Management

Despite their need for emergency department visits and hospitalizations for COPD, several participants questioned why they were recruited for this study and didn't think they had COPD. There was considerable confusion about the terms chronic obstructive pulmonary disease, asthma, emphysema, and chronic bronchitis.

I never heard about it until they told me I had the start of emphysema. .. I just heard about it, they never nailed it down as far as bronchitis, emphysema, ya know. .. That's all they mentioned to me, that's what I assumed I always had was emphysema. ..

Although smoking was universally recognized as the significant contributing factor to the development of COPD, many veterans also implicated exposures in the military including gun powder, agent orange, and other defoliants and chemicals as well as post-military occupational exposures to various dusts and fumes.

Despite almost universal experiences with episodic breathlessness, the participants reacted to these episodes with vastly different behaviors. Some utilized their rescue inhalers and a minority began steroids or antibiotics that they had available for these episodes. Others used urgent or emergency care. However, a surprisingly large number of participants stated that they attempted to “tough out” these episodes of extreme breathlessness, and neither used additional doses of their inhalers nor contacted their providers.

I got specific instructions. .. slow down, take it easy, don't try to do, to go too fast. If you do have problems, they told me how to use my inhaler properly, and uh, so you know, it helps what they recommended to me.

I didn't have my albuterol with me. .. I try not to carry it, ‘cuz I try not to use it, I try to get it to where it's out of my system. I don't know if you can do that. I keep trying, hoping.

i just tough it out. .. do the best I can. Sometimes it [breathlessness] scares the hell out of me, making me think I'm gonna suffocate.

I put mine [treatments] off as long as I can. .. Well, the breathing attacks, I put mine off as long as I can.

Nearly all participants were using inhalers or other respiratory medications. Most veterans felt that they had received adequate or extensive education about the use of their inhalers but many had questions about the inhalers and felt that the devices worked either too slowly or incompletely.

They give me a pink one [inhaler] that I cannot figure out how to use. I can't tell if I'm getting anything out of it or not. You got to turn it one way and then turn it the other way and breathe it in and I don't know if I'm getting it or if I ain't getting it. .. You can't tell with these things.

In addition to pharmacologic management of their COPD, many veterans had participated in pulmonary rehabilitation and smoking cessation counseling. Many smokers even expressed a sense of persecution due to repetitive and relentless encouragement at each healthcare encounter to quit smoking or enter a smoking cessation program.

Complex Healthcare Interactions

In general, most veterans were very satisfied with their overall VHA care. They felt that individual providers were dedicated, knowledgeable, and usually accessible but expressed some concerns about the systems and processes of care. Access to care, especially outside of usual operating hours, was an area of concern, especially waiting times for urgent care in the emergency department while feeling breathless. Some participants stated that they would assess the waiting time in the emergency department and, if it was too long, they would go to another hospital. The phone system was difficult to negotiate for many participants. They found the phone trees complicated and often were frustrated by the lack of contact with a person. Many felt that messages went unanswered and there was frequent confusion about appointments, schedules, and notification. Lastly, many participants were troubled by the pharmacy. Their concerns included a limited selection of respiratory therapeutics that did not include combination medications that they had access to at non-VA facilities, difficulties and delays in medication refills, and long waiting times.

Discussion

This qualitative study of veterans with COPD and high utilization of VHA healthcare demonstrates that this disorder affects each individual profoundly and extensively. COPD causes physical limitations to work, recreation, activities of daily living, sexual interactions, and housing. These restrictions corrode the emotional well being and mental outlook of veterans with COPD generating a mixture of feelings including decreased self-worth, vulnerability, depression, anxiety, hopelessness, fear, lack of control, and frustration. Veterans with COPD have a restricted social network due to effects on interactions with family and friends as well as increased reliance upon care givers. Veterans expressed limitations in their understanding of COPD, its cause and diagnosis, symptom management and treatment. Although most veterans were very satisfied with the general overall care that they received through the VHA, access to providers during nonstandard working hours, pharmacy and emergency care, and limitations in telephone communication impeded optimal interaction with the VHA healthcare system.

Although most clinical approaches to COPD management utilize biomedical pathophysiology to develop pharmacologic-based treatment regimens such as the GOLD and VA/DOD treatment guidelines for COPD (4,5), strategies of patient self management are increasingly being advocated (19). A recent Cochrane review showed that self-management education in COPD reduces hospitalizations and dyspnea but not emergency department visits, number of exacerbations, or exercise capacity (19). Additionally, self-management significantly improves quality of life measured by the Saint George's Respiratory Questionnaire but the improvement does not exceed the minimal clinically significant difference (19).

Adams and colleagues (20) showed that COPD management studies that incorporated two or more of Wagner's Chronic Care Model components (21) significantly reduced hospitalization rates, number of emergency room visits, and healthcare cost. Qualitative research is increasingly being used to study patients’ perceived and actual needs that can be used to ascertain the determinants for self-motivated change in health behavior and outcomes in COPD management (22,23). Qualitative methodology can determine the disease-related issues that are important to patients and can be used to develop management programs that address patient-valued outcomes such as reduction in breathless or improved function rather than less clinically relevant physiologic variables such as spirometry.

In this study, a multidisciplinary team provided a wide range of perspectives from different disciplines to design the focus group question guide and analyze the transcripts further expanding the breadth and interpretation of this examination of COPD's effects on veterans. When applied to models of chronic disease management and patient engagement in care, determining patients’ goals for treatment establishes the foundation for motivating improved knowledge and activating self-efficacy through psychosocial mediators that stimulate behavioral change and produce improvements in clinical outcomes (14, 24).

A survey of 719 patients with COPD in the European Union revealed the extensive effects of COPD on individuals’ lives (25). Over half of the respondents had reduced their physical activity for fear of respiratory distress and 47% arranged their activities to compensate for their respiratory symptoms. A similar study in the United States showed that COPD prevented 2 of every 5 patients from working and limited nonwork activites in nearly 2 of every 3 (14). A major theme of our focus groups was the reduction or impairment in personal activities ranging from occupations and leisure-time pursuits to sexual activity. A significant sub-theme was the lack of control over breathing and the sense that breathing ruled participants’ lives.

Many veterans with COPD noted the disparity between their outward normal appearance and their functional impairment that McMillan Boyles and colleagues (26) have described as the invisible disability of COPD. Pinnock and coworkers (10) describe COPD not as an illness but an altered way of life. As individuals with COPD become more debilitated, they enter a downward spiral with increased physical limitations causing a more sedentary lifestyle, restricted social interactions, and diminished enjoyment of activities that further reduces physical conditioning and function exacerbating feelings of low self-worth and depression.

Another significant theme was the diminishing social network within which individuals with COPD interacted. One third of study participants lived alone and many noted social and familial isolation due to limitations on activities and fear or apprehension of developing respiratory distress. The effect of social networks on COPD outcomes has not been extensively studied. Jordan and coworkers (27) showed that social isolation, being homebound, and the presence of COPD increased the risk of hospitalization for respiratory disease during the winter in the UK. Another study demonstrated a 50% increased risk of hospital admission for adults with deficient social support (25).

COPD and its physical symptoms and limitations caused reduced or unemployment, diminished recreational activities and interactions with family and friends that were associated with profound psychological and emotional effects on the focus group participants. Depression may occur in up to 80–88% of individuals with COPD (28, 29), whereas the prevalence of anxiety may be as high as 100% depending upon the instrument and classification (28). The presence of either depression or anxiety does not, however, correlate with the degree of physiologic impairment measured by spirometry, the current standard for determining COPD severity (32). In individuals with COPD, depression and anxiety are associated with worse clinical outcomes, including increased risk of relapse after an exacerbation, higher rates of mortality, and may be associated with more hospitalizations for COPD (31). Although trials of pharmacologic management of anxiety and depression in individuals with COPD have been equivocal, a recent meta-analysis showed that pulmonary rehabilitation significantly reduces symptoms of both disorders (31, 32).

Although nearly all of the focus group participants were aware of the diagnosis of COPD, a small number stated that they have never been told that they have COPD. We previously showed that up to 43% of veterans at the Cincinnati VAMC have airflow limitation based upon spirometry and that only 78% were aware of this diagnosis (1). The presence of COPD is often underestimated by healthcare providers because patients with few respiratory signs or symptoms are frequently not assessed by pulmonary function testing (26, 33–35). further substantiating the invisibility of this disease (26).

Increased access and provision of outpatient medical care by the VHA has led to greater use of preventive care measures including pneumococcal vaccination and a declining rate of avoidable hospitalizations (36, 37). A recent analysis of quality of care for veterans with common chronic diseases at the James A. Haley Veterans’ Hospital in Tampa, FL demonstrated good care for cardiovascular disease and diabetes but less robust adherence to treatment guidelines for COPD, a condition that has not been a primary focus of VHA quality improvement (38).

The pharmacy and medication refills were areas of concern for the focus group participants. Nationally, the VHA has instituted a personal health record, My Healthe Vet, and most veterans utilize this health information technology for pharmacy-related questions, especially prescription refills (39). Most of the participants used the telephone system rather than the internet. Further study of information and technology access is required to determine how veterans’ pharmacy needs might be best served. The incorporation of patient values into clinical practice including the development of patient aligned clinical teams and relationship-based care is an ongoing area of evaluation and study within the VHA (40).

Limitations

Limitations to this study include a potential self selection bias due to veterans who were more interested in their respiratory symptoms enrolling and participating in the focus groups; these individuals may represent an active, vocal minority of veterans with COPD. This investigation occurred at a single institution and may represent local or regional biases of the participants. Gender differences in the manifestations of COPD could not be evaluated as all the focus group participants were men. Lastly, the participants were selected from the top quintile of veterans with COPD ranked by healthcare cost and the universality of the focus group findings will need to be verified across the entire spectrum of veterans with COPD.

Conclusion

COPD causes pervasive and extensive effects on all aspects of patients’ lives that have significant consequences for their care and management. The results of this study will need to be confirmed in larger regional and national populations of veterans with COPD and can be used to develop comprehensive management guidelines that address patients’ psychosocial needs as well as the biomedical and physiological manifestations of COPD. Lastly, these conclusions may be relevant for other individuals with COPD who are not veterans and receive care from sources other than the VHA.

Declaration of Interest Statement

This research was supported in part by investigator initiated funding from Novartis Pharmaceutical Corporation. The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Patient Determinants of Health in Veterans with COPD: A Patient Focused Approach

Determinants of Health in Veterans with COPD: A Patient Focused Approach

Structured Focus Group Topic Guide

Introduction

Thank you for agreeing to participate in this focus group. We are interested in improving Veterans’ health and plan to use your opinions to develop a patient-focused care management program. All information that you provide will be strictly confidential, meaning that your answers will not be associated with your name. In addition, your answers or comments will not be shared with your physician, VA personnel or your family. Again, thank you for your participation.

{pre-introduction/discussion of focus groups/ground rules for participation}

Everyone in the group has been selected to participate in this focus group because you have a lung disorder. As a way of starting our discussion, it would be helpful to briefly share your breathing concerns.

1. How would you describe your breathing on most days over the past year?

1.2. What causes your breathing symptoms?

2. On most days, do you feel like you are in control of your breathing or is your breathing in control of you?

2.1 How does your breathing affect your well being/health?

2.2 How has your breathing changed what you can do compared to what you want or desire to do?

2.3 How has your breathing influenced social interactions or relationships with others?

2.4 How has your breathing affected your employment?

2.5 How has your breathing affected your living situation?

2.6 What affect does your breathing have on your outlook on life?

3. Let's think about the past 12 months. Has anyone had times when your breathing causes significant effects on what you can do or want to do that is beyond the usual day to day fluctuations or changes?

3.1. What do you sense as different during these episodes of breathing difficulty?

3.2 What causes these episodes of breathing difficulty?

3.3. What do you do when these episodes occur?

3.4 What prompts you to seek assistance when you are having breathing difficulties? What drives you to seek help? What change in your breathing is it that makes you take action to get help?

3.5. How soon after you develop a change in your breathing do you seek assistance?

3.6 Who do you usually contact when you have breathing difficulties?

Prompts: health care provider, case manager, family member, other

3.7 Where do you usually go when you have breathing difficulties?

3.7.1 Do you usually go to VA or nonVA facilities or providers?

3.8 Why do you go there?

3.8.1 What affects your choice of facility or provider?

4. Do you or your providers plan for similar episodes of breathing difficulty?

4.1 How do you plan?

4.1.2 Do you keep extra medications on hand?

4.2 What specific instructions has your provider given you should another episode of breathing difficulty occur?

5. Has anyone ever been hospitalized overnight at the Cincinnati VAMC for a breathing episode in the past year?

5.1 Tell me about the transition from outpatient to inpatient.

5.2 While you were in the Cincinnati VA, can you recall if you received information related to taking care of yourself after discharge?

5.3 Tell me about your subsequent outpatient visit after hospital discharge.

6. Has your health provider discussed the future of your breathing with you?

6.1 What are your expectations for your breathing in the future?

6.2 What unanswered questions do you have about your future health?

6.3 How do you feel about your future health?

7. Has a health care provider ever reviewed your breathing medications with you?

7.1 Has anyone ever explained the reason for taking your inhalers or medicines?

7.2 Have you ever been shown how to use your inhaler(s)?

7.3 Is there anything more that you would like to learn about your inhalers or your medications?

7.4 Is cost a concern in obtaining your medications/healthcare?

7.4.1 Have you ever had to limit or stop medicine use due to cost?

7.4.2 Have you ever had to choose between purchasing medicines and other necessities?

7.5 If you could invent a new breathing treatment, what would it do?

7.6 Has a health provider ever discussed assistance with stopping smoking?

7.7 Other than medications, are you aware of other techniques to improve your breathing?

8. Do family, friends or others assist you when you have difficulties with your breathing?

8.1 Do you have someone who can support you (give you help) when you are sick?

8.2 How does your breathing problems and need for care affect other members of your family or caregivers?

8.3 What resources would help your family or others assist you with your breathing and health? What would help make it easier for them to help you?

Now we are reaching the end of the focus group discussion, and we want to just ask a few wrap-up questions.

9. Is there anything else you want to discuss about your respiratory health in general such as what keeps you healthy?

9.1 What are some of the things that promote your respiratory health? Or prevent you from getting worse?

9.2 What prevents you from being healthy?

10. Is there anything else that we have not already discussed that you would like to share about your health or care that you receive at the VAMC?

Your personal experiences and opinions are very valuable to us. They will help us make sure we provide our Veterans with the care they deserve. Thank you very much for your time.

CODEBOOK: Determinants of Health in Veterans with COPD

10. Impact on life—physical (general)

11. Ability to work/play

11.1 For pay

11.1.1 Early retirement

11.1.2 Disability

11.2 See 11.4

11.3 Household chores

11.4 Help family around house-yard, housekeeping, dishes (includes prior 11.2-yard work)

11.6 Inability to play with grandchildren

12. Ability to do recreational activities

12.1 Hobbies-woodworking

12.2 Gardening

12.3 Enjoyment of outdoors-events, ballgames, fishing

12.4 Ability to travel

12.5 Ability to drive long distances/take trips

13. Physical limitations

13.1 Walking

13.2 Climbing stairs

13.3 Carrying items

13.4 Exercise

13.5 Ability to eat

13.6 Nearly all ADL's affected to some degree

13.6.1 Personal care-dressing, showering

13.7 Ability to drive

13.8 Ability to talk

13.9 Loss of spontaneity-need to plan and prepare for any activity, increased prep time

14. Sexual limitations

14.1 Effects of co-morbities

14.2 Effects of COPD

14.3 Medication effects

14.4 Effect on partners

15.

16. COPD symptoms

16.1 Sleep disruptions

16.1.1 Sleepiness

16.1.2 Osa and co-morbidities

16.2 Fatigue/weakness

16.3 Weight

16.3.1 Overweight

16.3.2 Underweight

16.4 Shortness of breath/dyspnea

16.5 Infections

17.

18. Housing

18.1 Effect on co-habitating family members

18.2 Inability to modify housing due to finances

18.3 Risk of foreclosure due to finances

18.4 Modification of existing house

19. Financial issues

19.1 Co-payments

19.2 Variability in VA healthcare compensation and confusion as to eligibility

19.3 Pay for help/services

20. Impact on life-social/emotional (general)

20.1 Acceptance/coping/adaptation

20.2 Denial

21. Self worth-helplessness-dependence on others

21.1 Views of others (perception) (lazy, doesn't contribute to household)

21.2 Reliance on others for basics-shopping, hygiene

22. Embarrassment/shame

23. Vulnerability

24. Frustration

24.1 With VA

24.2 With disease

25. Depression

25.1 Co-morbidities: anger management; PTSD; psychiatric diagnoses

26.1 Self pity

26.2 Pride

27. Isolation

27.1 limited/decreased social interactions

27.2 Unable to attend family reunions, go fishing, go to ball park

27.3 Social

28. Hopelessness

29.1 Fear

29.1.1 Of consequences of COPD

29.1.2 Of inability to control environment

29.1.3 Unable to control disease

29.1.4 Of social interactions

29.2 Control of breathing

29.3 Lack of control of COPD/breathing

30. Understanding of disease and treatment (general)

31. Awareness of diagnosis

31.1 Knowledge/information deficit

31.2 (See 38.3)

31.3 Unaware of diagnosis

31.4 Confusion with terminology esp emphysema, bronchitis vs. COPD, unsure what COPD stood for

32. Awareness of triggers of breathing difficulties

32.1 Little insight into disease triggers or exacerbations

32.2 Altered perception of “normal”

32.3 “Tough it out” rather than seek care

32.4 See 35.5

32.5 Role of weather, environmental factors-heat, humidity, pollen makes breathing worse

33. Pharmacologic management

33.1 Training in use of inhalers

33.1.1 Lack of clarity-sense providers/pharmacists unclear

33.1.2 No mention of spacers

33.1.3 Lack of specific techniques

33.1.4 No defined instructor or instructions

33.1.5 In general most felt they knew how to do it but no specifics

33.2 Reasons/role of medications

33.3 Dosing questions/confusion

33.4 Inhalers

33.4.1 Lack of instruction

33.4.2 Difficulty in use

33.4.3 Inability to tell if it is working-delivering meds or if meds are having an effect

33.5 Adherence/compliance with meds

33.6. Oxygen Use

33.6.1 Stigma of portable oxygen

33.6.2 Sign of weakness

33.6.3 Invites pity

33.6.4 Invites crime or negative comments

33.6.5 Safety hazard

33.6.6 Smokers in proximity

33.6.7 Trip others

33.6.8 Planning issues—ensure sufficient quantity for extended events

33.6.9 “Tether effect” limits physical activity

33.6.10 Oxygen use connotes severity of disease

34. Understanding of non-medical treatment options

34.1 Pulmonary rehabilitation

34.2 Pursed lip breathing

34.3 COPD education

34.4 Mobility aids

35. Emergencies —when breathing issues become acute

35.1 Urgent care

35.2 VA v. nonVA

35.3 911

35.4 EMS

35.5 Difficulties with access to care: transportation, telephone, ED, Primary care, pulmonary (access to VA vs. other hospitals moved to 35.2)

35.6 Ambulance cost

36. See 34.2

37.

38. Awareness of causes of disease

38.1 General acceptance of role of tobacco

38.2 Role of military in initiating tobacco use/addiction

38.3 Other factors: (includes prior 31.2 factors other than tobacco/agent orange)

38.3.1 Agent orange

38.3.2 Dusty trades

40.

50. Smoking issues

51. Cessation efforts

52. Discussions with providers

52.1 Universally discussed but not successful in quiting

53. Association with cause of COPD

54. Multiple addictions-“addictive personalities”

54.3 Alcohol

54.4 Drugs

55. Fear/avoidance of smoking cessation staff

55.1 Reasoning-sense of antagonism

56. Interactions with friends/family who smoke

60. Co-morbidities

60.1 COPD related to breathing/lungs

60.2 COPD not related to breathing/lungs

70. COPD-effect on family

71. Need for caregiver

72. Family role and impact

73. Role reversals

80. Care at the VA

81. Appointment frequency

82. Access to providers, telephone

82.1 Pride in gaming the system—back phone numbers

82.2 Lack of knowledge about providers-

82.1 Not knowing providers names

82.2 Not knowing how to contact providers

82.3 Inability to navigate the “VA system”

82.4 Interpersonal interactions with providers

83. Communication

83.1 With providers

83.2 Messages; getting responses-returned calls

83.3 Information about appointments, scheduling

83.4 Confusion as to time/date of appointments

83.5 Notification about appointments

83.6 Return phone calls/messages

83.7 Complexity of phone trees

84. Pharmacy

84.1 Script refills

84.2 Navigating pharmacy system

84.3 Copayments

84.4 Waiting times

84.5 Education about medications

84.6 Confusion with pharmacy esp refills, mailing vs. picking up meds

84.7 Formulary limitations

85. ED Care

90. Suggested resources or education

100. Prognosis—or future outlook

100.1 defeatist