Improving COPD Care in a Medically Underserved Primary Care Clinic: A Qualitative Study of Patient Perspectives

Abstract

We conducted a focus group study in an urban hospital-based primary care teaching clinic serving an indigent and Hispanic (predominantly Puerto Rican) population in New England in order to learn how patients with Chronic Obstructive Lung Disease (COPD) perceive their disease, how they experience their medical care, and the barriers they face managing their disease and following medical recommendations. The research team included medical doctors, nurses, a medical anthropologist, a clinical pharmacist, a hospital interpreter, and a systems analyst. Four focus groups were conducted in Spanish and English in April and May 2014. The demographic characteristics of the 25 focus group participants closely reflected the demographics of the total COPD clinic patients. The participants were predominantly female (72%) and Hispanic (72%) and had a median age of 63. The major themes expressed in the focus groups included: problems living with COPD; coping with complexities of comorbid illnesses; challenges of quitting smoking and maintaining cessation; dealing with second-hand smoke; beliefs and myths about quitting smoking; difficulty paying for and obtaining medications; positive experiences obtaining and managing medications; difficulties in using sleep machines at home; expressions of disappointment with the departure of their doctors; and overall satisfaction with the clinic health care providers. The study led to the creation of an action plan that addresses the concerns expressed by the focus study participants. The action plan is spearheaded by a designated bilingual and bicultural nurse and is now in operation.

KEYWORDS:

• focus group
• barriers
• Puerto Rican population
• qualitative research
• urban outpatient clinic

Introduction

Chronic obstructive pulmonary disease (COPD) is a common condition characterized by airway obstruction that is not fully reversible (1). It is associated with acute exacerbations that often occur with increasing frequency and intensity. Chronic bronchitis and emphysema are the primary diseases causing this air flow limitation. Although there is no cure for COPD, many facets of the disease are treatable. COPD is the third leading cause of death in the United States (2) and worldwide (3). Overall, 6.4% of the adults in the United States have been told that they have COPD (4).

In the United States, COPD prevalence is highest among women in most age groups and rises with age and poverty (5). The highest rate of COPD is reported to be among Puerto Rican adults living in poverty at 13% (5, 6). COPD exacerbations are the third most common reason for hospital readmissions among Medicare beneficiaries (7). Exacerbations disproportionately affect minorities and individuals of lower socioeconomic status (8). Factors contributing to hospital readmissions include healthcare quality, access to care, inadequate transitions of care between hospital and ambulatory settings, and multiple socioeconomic factors (9). Patient involvement in care is critical to successful management of this progressive disease.

Qualitative research using focus groups can elicit participants' perspectives on health, disease and treatment and has been used extensively in health care settings (10). Focus groups are a type of group interview conducted with 6 to 12 participants all of whom share a culture or sub culture. The focus group enables the participants, who are experts about their own culture or subculture, to talk in a comfortable setting (11, 12). In this study, the subculture of the participants is that of individuals with COPD who are being treated in a primary care clinic of a big city hospital. Discussions are audiotaped, transcribed and later analyzed for content.

A review of the qualitative literature regarding patient points of view in managing their COPD suggests that medical professionals can learn a great deal about the barriers and challenges patients face as they attempt to implement medical recommendations (13).

A Veterans Administration focus group study of predominantly white male COPD patients sought to discover the patient point of view regarding the impact of the disease and their own goals for treatment (14). The veterans described physical limitations, restricted social networks, depression, and reduced feelings of self-worth. They pointed out the disparity between their outward appearance and their functional impairment. The ‘invisibility’ of COPD for some patients led to what Boyles, Bailey, and Mossey (15) describe as dilemma stories. These dilemmas are expressed by patients as they decide when and how to explain their COPD impairment in situations in which their symptoms are not obvious. In contrast to the ‘invisibility’ of COPD, those who need to use oxygen therapy have raised concerns about stigma of being in public with oxygen (16).

Qualitative research has also been used to incorporate the patient point of view as a new service is contemplated or initiated. For example, in a study of primarily poor, female, and African American asthma patients, Black et al. (17) conducted focus groups seeking suggestions for how an asthma patient navigator could be of help. Patients suggested that the navigators could prepare lists of medications and questions to be addressed before a medical visit, get medications, and fill out paperwork.

In Ireland, McCabe et al. (18) utilized focus groups to incorporate COPD patient perspectives in the development of peer-based videos to promote behavior change. Patients gave concrete suggestions that videos be relatively short, tailored to the severity of COPD, that normal activities be highlighted, and that they be positive and culturally relevant.

In the Netherlands, Caron-Flinterman et al. (19) conducted focus groups asking COPD patients their views regarding the direction that COPD research should take in the Netherlands. Patients suggested that priorities focus on the relationship between COPD and comorbid diseases as well as the side effects and interactions of medications.

However, there is little literature on patient perspectives in a primarily Hispanic and medically underserved COPD population. This study was conducted in an urban clinic (the Clinic) serving a primarily Hispanic (Puerto Rican) population in New England to learn how patients with COPD perceive their disease, how they experience their medical care, and the barriers they face in managing their disease as the Clinic was launching a new service to improve COPD care.

Methodology

Aims of the study

This was an exploratory and descriptive study that sought to understand the COPD patient viewpoint in terms of experiences with care from the Clinic and to offer suggestions for future patient care.

Design: The focus group

The focus group questions were created by the anthropologist in consultation with the primary health care research team that included medical doctors, nurses, a medical anthropologist, a clinical pharmacist, a hospital interpreter, and a systems analyst. Questions were designed to elicit the broadest range of thoughts from the patients. The focus group questions were:

•	What are some of the problems you experience because of your COPD?
•	What has been your experience in receiving health care for your lung problems here?
•	Tell us about any problems in your treatment here.
•	Describe any problems you have had in following up with the recommendations of your health care provider.
•	Tell us about any problems with getting your medications.
•	If the Clinic made changes to their care for COPD, what changes would you recommend?

Setting and participants

Focus group participants were recruited from a single large urban primary care teaching clinic affiliated with a major tertiary care center. The clinic is the site of 45,000 patient visits annually. The patients are on Medicaid (50%-60%), Medicare (20%–25%), and uninsured (20%–25%). Thus we know that the patients are primarily indigent. The clinic patients are primarily Hispanic (Puerto Rican) (75%) and Spanish-speaking only (75%).

The Clinic is located in a city with a population of over 100,000, of which Hispanics comprise 43.4%. The Hispanic population is 75.3% Puerto Rican (20). The city has 33.6% of its population living below the poverty level (21).

Study sample

All Clinic patients with a COPD diagnosis (ICD-9 code 491, 492, and 496) were identified and included on a master list. There were no exclusion criteria. Two bilingual clinic staff, trained as to the study objectives and how to effectively address participation, telephoned patients, in order of the date of their most recent visit to the Clinic, inviting them to participate in the study. This method achieved a type of randomization that resulted in the focus group participants reflecting the same demographic characteristics as the entire master list of Clinic COPD patients (see Table 1).

We invited 12 to 15 patients to participate in each group to ensure that we would have 6 to 10 participants per group, the recommended sample size for focus group sessions (22). All study materials were translated into Spanish.

Ethical approval

The hospital institutional review board approved this study by expedited review.

Data collection

Four focus groups were conducted between April and May 2014, facilitated by a bilingual anthropologist (IG) and a bilingual certified hospital interpreter (BS). Neither were medical providers nor were known to the focus group participants.

On the day of the focus group, each participant was given an information sheet describing the study and explaining that their medical records would not be linked with their focus group participation. Participants were asked to complete a brief anonymous demographic survey in order to compare the participants to overall COPD population at the Clinic. The sessions were held in a private conference room at the Clinic. Refreshments were provided and participants received a $20 gift card incentive for their participation. Each session lasted approximately 1.5 hours.

The focus groups were audio-taped and subsequently transcribed by an accredited transcription service. The groups were run bilingually in English and Spanish. After each person spoke the facilitator (IG) briefly summarized what the person said in the other language so that all participants would understand. The hospital interpreter (BS) assisted with interpretations and in organizing the groups.

Data analysis

We were guided in our focus group design and analysis by the 32-item checklist of the consolidated criteria for reporting qualitative research (COREQ) (23). The transcription of the audio tapes was checked with the recordings for accuracy and then the Spanish statements were translated into English by IG and BS for analysis. Descriptive and summary statistics were performed for baseline demographic variables and the chi-square was used to determine statistical signification using SPSS 22.

Focus group content was organized according to themes emerging from the discussions (23, 24). The technique of open coding (24) was used, which involves taking each statement of the participant's narrative and generating larger concepts that appear to be expressed. The research team then discussed each of the themes and asked questions that led to more analysis of content. In this way the content was examined (‘triangulated’) by the entire team.

Results

Participants were predominantly female (72%) and Hispanic (72%). The racial and ethnic distribution was Hispanic (72%), White (16%), and African American (12%). The age range was 41–89 years old with a median age of 63 (see Table 1). The test of significance for the differences in sex were performed and the differences were not statistically significant (chi square statistic is 0.1599; P value is 0.689279: therefore not significant at p < 0.05). Therefore were no statistically significant demographic differences between our 25 focus group participants and the 452 COPD clinic patients from which the sample was drawn.

Table 1. Demographic table.

Variables	Focus Group (n = 25)^‡	General COPD Population (n = 452)
Sex
Females No. (%)	17 (68)^*	287 (64)^*
Males No. (%)	8 (32)^*	161 (36)^*
Age: median (range)	63 (41-89)	N/A
Ethnicity
Hispanic	18 (72)	314 (71)
Race
Non-Hispanic	7 (28)	7 (29)
African American	3 (12)	54 (12)
White	4 (16)	72 (16)
Asian	0 (0)	1 (0.2)

‡ 25 total participants (Group 1 = 8 participants; Group 2 = 5 participants; Group 3 = 8 participants; Group 4 = 4 participants).

* Chi square statistic is 0.1599; P value is 0.689279. Not significant at p < 0.05.

Our focus group sample also reflects the high prevalence groups in the United States with COPD in that our participants were Puerto Rican (5, 6), living under the poverty level, were over 55, and were female (5).

Analysis of focus group contents

Ten themes emerged from these focus groups. Major themes expressed in the focus groups included:

•	problems living with COPD
•	coping with complexities of comorbid illnesses
•	challenges of quitting smoking and maintaining cessation
•	dealing with second-hand smoke
•	beliefs about quitting smoking
•	difficulty paying for and obtaining medications
•	positive experiences regarding medications
•	difficulties using sleep machines at home
•	expressions of disappointment with the departure of their doctors
•	overall satisfaction with the clinic providers

In the following excerpts we present a sampling of the words of the focus group participants that best illustrate each theme. The comments of the Hispanic participants were almost all said in Spanish.

More of the focus group participants' responses are included in the online supplement to the article.

Problems living with COPD

In the beginning of each session, participants spoke of their many COPD-related challenges. Sometimes this was quite emotional, as illustrated next. Several people said that they rarely left home. One participant spoke of the ‘invisibility’ of COPD as she does not appear to be sick.

[Crying] I can't do everything I used to do. I can't make the bed. I've got to do a little bit, and then sit down. I can't wash the dishes. (African American Female)

Difficulty dealing with multiple illnesses

Adding to the challenges of living with COPD is the difficulty of managing multiple co-morbid illnesses. Among the multiple illnesses mentioned were diabetes, asthma, sleep apnea, anxiety, depression, high blood pressure, and stroke.

The doctor says that they can't take me off so many medications because my problems are all different. I have medications for the depression, for the diabetes, for the heart, for the asthma, for the apnea, for the nerves. (Hispanic female)

Issues related to quitting smoking

Many people described their challenges related to trying to quit smoking. This part of the session brought forth many words of commiseration and encouragement from other members of the group.

I told the doctor that I don't have the strength and the will power (to quit smoking) and he said: “I cannot deal with you. If you don't quit smoking, I will see you with an oxygen tank in one year.” And that made me feel very bad. (Hispanic female)

Well, I've been smoking ever since I was – probably – 14 years old. When we worked at the tobacco farm, everybody started smoking there. (White male)

Problems dealing with second-hand smoke

Even after quitting smoking, some of the participants were very bothered by second-hand smoke in their environment. They expressed interest in how to avoid second-hand smoke.

I had neighbors who smoked. I stayed on the third floor and they smoked on the steps- it came up to my apartment. There was nothing I could do about it. (African American female)

Beliefs (myths) about quitting smoking

Some participants expressed beliefs about quitting smoking that could be deterrents to quitting.

I could stop breathing if I stopped smoking suddenly. (Hispanic female)

Success in quitting smoking

Some of the participants were successful in quitting smoking and shared their stories. They spoke of personal strategies in using medications, nicotine replacement therapy, and avoiding triggers to smoke. They spoke of challenges of the sale of “loosies” (single cigarettes). There was a great sense of pride for those who quit.

So I'm proud of myself. I haven't bought any cigarettes, but they do have the loosies, where you can go buy one cigarette. (African American female)

I know bad health well. I was in intensive care and I believed that I was going to die. When you see this you quit cigarettes. You say, “Oh my God, if you continue this way you are going to die.” (Hispanic female)

Difficulties paying for and obtaining medications

In addition to the challenges of quitting smoking the participants had difficulty regarding their ability to adhere to the medications, devices, and machines prescribed. When desperate, some participants used other people's medicine.

They gave me a medication that Medicaid doesn't pay for, so I just wait to get sick and go to the hospital. When I go to the emergency room, they give me one of this, one of that and I make them last forever. (African American female)

Good experiences in obtaining and managing medications

Despite multiple problems, some participants have had positive experiences in obtaining and managing medications.

I don't have problems (with medications) because I have nurses who come to my house. They come every week on Tuesdays and Fridays. They are lovely, lovely, responsible people. (Hispanic female)

Difficulties utilizing machines

In addition to problems with medications, participants had difficulty in utilizing machines such as the CPAP (Continuous Positive Airway Pressure). For example:

The doctor told me that I have to use it (CPAP) but I can't use it every night because I can't sleep with it. I use it until midnight, but the doctors told me that no, I have to use it all night because I can die sleeping. (Hispanic female)

Challenge of receiving care from a teaching hospital clinic

Some participants expressed disappointment when a favored doctor completed their training and they had to acclimate to a new provider.

My suggestion for improvement is that they keep the doctors here because they change the doctors a lot here. When they change they come and ask the same questions. (Hispanic female)

Expressions of satisfaction

When we asked the participants how they felt about the COPD services they receive from the Clinic providers, there were many expressions of satisfaction.

I have a good opinion of the hospital, the doctors here. They worry a lot about everyone's health, and if they can't find a solution, they send you to experts. They help you a lot. (Hispanic female)

Discussion

There is a substantial body of literature documenting the challenges in quality of life experienced by patients with COPD (25–27). Our study from a predominantly Hispanic and low income population replicate and confirm previous studies and underscores the problems patients have living with COPD.

Smoking cessation was of great interest to the focus group study participants. Smoking is more prevalent among adults with COPD than in the general population. Schiller and Ni (28) analyzed U.S. National Health Interview Surveys covering the years 1997–2002, and found that 36.2% adults with COPD were current smokers in contrast to 22% of adults without COPD. In a review of large-scale international studies of smoking rates for patients with COPD, Tashkin and Murray (29) report rates ranging from 30.4% to 43.0%.

An Australian study of health care preferences of people with asthma who are trying to quit (30) found that patients wanted advice from health care professionals, a cessation plan, and decreased cost of NRT products. A study from England concluded that research needs to focus on smoking cessation for COPD patients who have had multiple quit attempts and numerous co-morbid physical and mental health problems (31). A study from Greece demonstrated the effectiveness of an intensive smoking cessation program for patients with COPD and asthma (32). The program stressed frequent follow-up contact, especially in the early weeks of quitting.

What patients think about the link between smoking and their COPD is important in the efforts they make toward quitting smoking. Small et al. (33) explored the patient point of view of patients with COPD in England.

Many attributed their COPD to their working life in the mines in industrial northern England and were skeptical about the link between smoking and lung disease. Although our study participants did not express skepticism regarding the link between smoking and COPD, some did think that quitting could be dangerous. Knowing beliefs about smoking cessation can lead to more culturally informed smoking cessation counseling.

The concern voiced in this study over obtaining medications in a timely manner was also found in a study of COPD patients in the Veterans Healthcare Administration study (14). A study of Latino patients who had not picked up their medication in 2 weeks found that cost and the pharmacy hours were the two major reasons for not picking up medications. Interestingly, language issues were not cited (34). Clearly, understanding barriers to medication adherence is vital.

Previous research corroborates our finding that dealing with the multiple medications, airway clearance devices and prescribe machines present challenges as well (35). Patients who are prescribed CPAP require a great deal of guidance, patience and problem solving before they adjust to the machine and begin to report feeling better and more attentive (35). Frustrations may include mask leaks, mask dislodgement, excessive salivation, claustrophobia, and difficulty in falling asleep (36). Errors in inhalation technique have been reported to range up to 85% in pulmonary patients (37). Rechecking inhaler technique on a regular basis has been suggested as one measure to counter this high rate of errors (38).

Implications for practice

To address patient concerns so vividly expressed in the focus groups, the Clinic team developed an action plan for their COPD population. The Clinic action plan is supported by the team and spearheaded by a designated bilingual and bicultural nurse and includes these key elements:

•	Verbally acknowledge the suffering, role changes, and modifications in daily living that COPD patients must endure while encouraging independence.
•	Expand current tobacco cessation services to include additional staff trained to provide culturally and linguistically appropriate cessation services.
•	Uncover and remedy any problems in obtaining, paying for, or using COPD medications, devices, and machines.
•	Improve access to social services, transportation, pharmacy services and education.

Limitations of the study

Our focus groups were conducted bilingually. The facilitator briefly summarized the comments each person made in the other language of the commentator in order to be sure that all of the Spanish and English speakers followed the conversation. It is possible that separate groups, in Spanish and English, could have elicited more depth of comments. On the other hand, by offering the participants four different focus group meeting times, we maximized participation.

We did not know the severity of the COPD in study participants apart from what they said in the focus groups since we had not linked the patients to their medical records. We could not analyze the patient comments in relation to their disease severity.

Finally, although we believed that we had achieved saturation in the information coming forth in the focus groups (i.e., new information was not emerging) it is also possible that if we had conducted more groups, more themes would have emerged.

Conclusion

This study highlights the power of focus groups to elicit patient concerns about the delivery of their medical care. The major concerns that surfaced from this COPD study were: problems of everyday living, including sleeping; dealing with their COPD together with their comorbid illnesses; the challenge for many of the participants with smoking cessation; the problems of dealing with second-hand smoke in their environments; paying for and obtaining medications for their COPD; not being able to obtain the medications which led to health emergencies, an instance of purchasing or borrowing medication from another patient, and in one case, leaving the Clinic for care and transferring to another clinic.

Some participants felt challenged in using the machines that assisted them for sleeping and appeared to be looking for more support in the use of the machines and keeping the machines updated. Many participants expressed disappointment when their doctor moved on to another experience. Finally, there was a high degree of satisfaction with the primary care providers at the Clinic. The study has led to the creation of an action plan that reflects the voices of these patients.

There is an expanding literature unearthing the patient point of view through focus groups. In the case of COPD, many scholars have underscored the importance of further understanding the behavioral components of the disease in order to reduce the occurrence and reoccurrence of exacerbations. Our study illustrates some of the challenges faced by urban poor COPD patients that the Clinic staff was able to address through concrete actions.

Acknowledgments

We thank Jacqueline Chang, BS, for bibliographic assistance. We thank Ruth J. Garcia and Nelson Romani for their assistance in inviting the patients to participate in the focus groups

Funding

This research was supported by the Asthma Education Fund of the Aetna Fund of Hartford Hospital.

Declaration of interest statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.