Chronic obstructive pulmonary disease (COPD) is the leading cause of hospitalization for older adults in the United States. According to the World Health Organization, COPD will become the third leading cause of death worldwide by 2020 [1,2]. Disparity populations unquestionably bear a more significant burden of suffering, with death rates rising faster than that in whites [1,2]. African Americans and Hispanics are disproportionately affected by social and economic inequalities that impact access to care, including language, acculturation, and immigration status [3]. Both groups bear a high burden of illness and death due to COPD and asthma and are twice as likely to visit the emergency room for COPD-associated conditions as compared with non-Hispanic whites [4,5]. Higher rates of smoking, reduced health access (especially to pulmonary rehabilitation [PR]), and lower socioeconomic status (SES) all contribute to this high disease burden [6,7]. Lower SES and ethnic minority COPD patients are also at increased risk for readmission. COPD patients admitted for COPD exacerbation have a 23% and 50% risk of 30-day and 12-month readmission [8], respectively, and African American and Hispanic race or ethnicity is associated with an almost twofold increase in hospitalization risk [9]. Patients and their caregivers suffer from discontinuity of care and decreased quality of life with each of these transitions into and out of the hospital. This phenomenon has been adopted as a marker of quality care and is tied to penalties and incentives imposed by large payers, including the Centers for Medicare and Medicaid described in more detail below.

Fortunately, early PR after admission has been shown to improve patient quality of life, satisfaction, and adherence; decrease hospitalization; and improve functional capacity, as measured by the COPD Assessment Test; body mass index, airflow obstruction, dyspnea, and exercise capacity index; 2-min step test; and 6-min walk test [10,11]. Unfortunately, referral and uptake rates are poor, particularly for African American and Hispanic patients, with only a small proportion of the intended target population receiving PR [10,12,13].

Previous research suggests that interventions that have been culturally tailored may result in improved patient outcomes. To improve generalizability across racial, ethnic, and income groups, COPD interventions should be tailored for acceptability and relevance for at-risk, underserved populations [14-16]. The community-based participatory research (CBPR) approach is one such approach to cultural tailoring. CBPR, a collaborative approach between researchers and stakeholders (including patients, caregivers, community-based organizations, and providers), has been applied in studies to assist in developing programs that address the needs of underserved communities in multiple areas [14]. These areas include heart failure [17], mental health [18], cancer [19], sexually transmitted infections [20-22], and smoking [23]. Similar to a science practitioner model, the purpose of the CBPR process is to address gaps between theoretical and real-world implementation using joint decision making. These decisions can include defining the research question, collecting and analyzing the data, interpreting the findings, and disseminating the results [14].

There is a dearth of literature regarding telehealth adaptation in COPD patients from underserved communities. The qualitative process reported herein describes the method used to identify factors perceived by community members to be crucial in successfully testing a home telemonitoring (TM) program in communities with poor access to care. We used a CBPR approach via a community advisory board (CAB) that included African American and Hispanic COPD patients and caregivers, community advocates, and disparity experts in the New York metropolitan area. This paper presents community and stakeholder feedback on iterative adaptations to a research study testing telehealth-delivered PR. Involving the community in outcome selection, intervention adaption, and interpretation of results is key in enabling overall intervention effectiveness, as one that is not acceptable in a particular community is not be likely to be replicated [16].

This study aimed to explore the perspectives of community stakeholders through the conduct of 2 focus groups of members of a CAB established to ensure patient centeredness at every phase of a mixed methods, comparative effectiveness research study of in-home telepulmonary rehabilitation.

Data shown herein were collected during the first 2 of the 5 CAB meetings that occurred during the first 2 years of the 3-year study period. These initial 2 CAB meetings were conducted before the randomized controlled trial (RCT) to culturally tailor the intervention to the needs of the community. Different moderator guides were developed for each of the CAB meetings (see Multimedia Appendix 1) [24].

Approximately 20 CAB members were invited to each meeting, with about one-third representing patients and caregivers, one-third representing providers (pulmonologists, researchers, and primary care physicians), and another one-third representing the other stakeholders (such as community-based organizations). Meetings were held in a private room of a public library in Queens, New York, to facilitate attendance by community members. The vast majority of CAB members attended both meetings (CAB meeting 1=10 and CAB meeting 2=18). CAB members were reimbursed (US $50) for their time and transportation for participation in each discussion.

CAB members included stakeholders, including African American and Hispanic COPD patients; nonprofessional caregivers; experts in health and social disparities; clinicians (geriatrician, pulmonary expert, and a respiratory therapist); and patient advocates. The role of the CAB was to advise the study team on all aspects of study design, implementation, evaluation, and dissemination over time. More specifically, the CAB was responsible for identifying factors expected to impact acceptance and feasibility among this population. Although feedback from all CAB members was incorporated, the study team gave particular weight to patient stakeholder feedback. Discussions lasted around 2 hours each and were audio recorded and then professionally transcribed.

Content analysis was used to analyze transcript data. After each session, the recordings were professionally transcribed, and a facilitator developed a codebook that allowed for categorization of the data. Moreover, 2 qualitative researchers initially worked independently on the coding of each transcript. After completion of the coding, the researchers met to discuss and revise the codes. A process of discussion and reflection was used to settle any disagreements on the codes. Thereby, researchers were able to identify themes and relationships found in the data [25,26]. The main themes that emerged identified specific recommendations and perceptions of barriers and facilitators for intervention implementation.

The results described below show the general themes and subthemes that arose from the 2 focus groups of the CAB stakeholder meetings. The discussion centered around the adaptation of the PR TM program, from both consumer and provider perspectives. Consumer perspectives mainly focused on cultural tailoring, whereas provider perspectives focused on equipment functionality (eg, Can a frail, older patient sit on the bike?).

The first meeting began with a general discussion of the needs of COPD underserved patients; multiple challenges were identified, including factors that affect access to PR. These factors included insurance payment for PR, repeated hospitalization, medication management, and comorbidities.

After the general needs assessment discussion, the principal investigators presented a demonstration of the initial version of the rehabilitation equipment (a bicycle). The equipment demonstration illustrated that the equipment initially overwhelms some patient stakeholders; although the hands-on aspect of the demonstration helped them feel more at ease, the CAB felt that important adaptations were needed to ensure safety and improve the usability of the intervention.

On multiple occasions, the CAB discussed the benefit of having access to PR right in one’s home. Given that for this patient population, it is not always feasible to travel to therapy, having this access allows patients to continually participate in exercise—an important part of maintaining quality of life. One patient also noted that they felt more comfortable being at home with this program than going out to a gym:

Although previous meta-analyses have documented the clinical efficacy of remote monitoring of patients with chronic illness [28,29] and discussed the importance of adapting interventions to facilitate cultural relevance [17,18], this is the first study to describe the formative process of a CBPR study aimed at optimizing home TM utilization among African American and Latino COPD patients from underserved communities. As noted above in detail, 5 major themes emerged from qualitative analyses of the CAB meetings. Interestingly, although some of the tailoring was cultural in nature (eg, developing recruitment brochures and videos of persons who look like us), much of the tailoring had to do with intervention comfort and logistics. For example, progressive teaching to self-efficacy was an important theme that transcends culture and language.

Several significant changes to the equipment were made in response to CAB recommendations. Specifically, the CAB recommended lowering the height setting on the bike to accommodate patients who may be unsteady climbing up onto the seat. To ensure patient safety in getting on and off the equipment and to ensure the patient’s competency in using the equipment, the CAB recommended that the patient be accompanied by a staff person for at least the first session.

Another intervention adaptation involved welding the arm that holds the pulse oximeter to the back of the bike to remove restriction of movement because of the wire from the pulse oximeter. Similarly, a second arm was welded onto the bike that allowed the patient to move the tablet to the best possible position for viewing.

Other intervention adaptations to facilitate safety included the replacement of the pulse oximeter by a Nonin watch, whereby sensors are kept on throughout the whole session and sensor values are directly sent to the respiratory therapist for immediate monitoring. Tablets were also adapted for icon use to facilitate easier access to different aspects of the app (point and click), regardless of patient primary language.

Protocols for handling patients who signed on to the session late (thereby interrupting others) were also set by the CAB. Similarly, the CAB also suggested the importance of graded tasks, or mastery experiences, as an important component of self-efficacy: in this case, having the respiratory therapist gradually introduce exercises to patients over time to facilitate task confidence.

CAB changes to the recruitment process included the use of a recruitment brochure and a video that presents real patients that look like us (vicarious modeling) rather than actors. Brochures were developed to inform prospective patients about the study and leave detailed information with the patient to share with caregivers and family. The CAB also strongly suggested utilizing a common language rather than medical jargon. For example, using the term EPOC was recommended to accompany the term COPD, which is often unfamiliar to Hispanic patients without medical backgrounds and can be especially daunting to those patients with lower health literacy and for whom English is a second language. The CAB also suggested that the recruitment team work with inpatient respiratory therapists to help create buy in from hospital staff to recruit for the study.

In addition, as a result of CAB recommendations, recruitment staff were trained in motivational interviewing techniques. Finally, in response to recruitment challenges, the CAB suggested that we expand recruitment efforts from inpatient to outpatient clinic recruitment as long as the patients met the criterion of no more than 3 weeks from hospital discharge.

This qualitative study limited data collection to a CAB with membership from the New York metropolitan area. Thus, findings from the study may not be generalizable to other settings and should be interpreted with caution. Other study limitations include the small number and mixed nature of the groups, potentially limiting the likelihood that full theme saturation was reached.

The strength of this qualitative study is the utilization of a CBPR approach. The role of the CAB was to provide the study team with stakeholder perspectives and guidance in the development, implementation, and evaluation of home TM COPD rehabilitation intervention tailored to underserved African American and Hispanic patient populations. The CAB led discussions on adaptation, usability, and program satisfaction and ensured that the conduct of the research remained patient-oriented. Each member of the CAB provided a unique perspective. All members had different expertise, skills, and experience, which contributed to the success of the adaptation of the intervention. As evidenced by our themes, the CAB was critical in identifying and resolving issues that surfaced during the project. A CBPR process was necessary to ensure that relevant cultural and patient-centered factors were addressed in optimizing our intervention as feasible and acceptable to African American and Hispanic underserved patients.

CAB meetings were held in English and in Spanish simultaneously through the use of a live interpreter. Although the translation resulted in a slower session, it facilitated the inclusion of stakeholder perspectives from both English- and Spanish-speaking participants.

There has been a dearth of literature regarding telehealth adaptation in COPD patients from underserved communities. This qualitative study allowed us to gauge community stakeholder perspectives about intervention adaptations for PR at home. Identifying adaptations that are important to key stakeholders through the CBPR-based method is a necessary process to ensure that a complex intervention is generalizable for patients from underserved communities.