An advocacy group for patients with chronic obstructive pulmonary disease (COPD) and their caregivers has gathered data identifying 6 key domains of COPD research that are considered by patients to be the most important. Results of the data analysis were recently published in the Journal of Patient-Reported Outcomes.
The research and analysis represent a collaboration between the COPD Foundation (an advocacy group for patients with COPD and their caregivers) and the Kaiser Permanente Center for Health Research. The COPD Foundation is host to the Patient-Powered Research Network (PPRN), which is a US-based network of more than 8000 individuals with COPD or who are at risk for COPD who have agreed to share their health information for research purposes.
All PPRN members received a self-administered, online survey to complete.
The COPD PPRN recruited participants digitally via COPD360social — a free online social network — and Facebook, as well as through community outreach. At the time of registration on the website, all future COPD PPRN members were requested to complete a baseline survey about demographics, existing medical conditions, current symptoms of COPD, and interest in research. All members were also invited to complete an annual longitudinal survey at 1 year after enrollment.
There were 2 open-ended survey questions used to capture relevant data: (1) “What research in COPD matters most to you?” and (2) What other things do you want to tell us about research for COPD that matters to you, or do you have any other comments for researchers?” The first question was asked in the baseline survey; the second question was asked in both the baseline survey and the longitudinal survey.
The investigators sought to provide an overview of domains for research that were offered by individuals living with COPD and their caregivers. All responses to the survey were evaluated with use of a content analysis approach; domains were then created for categorizing all of the survey responses. All responses were categorized independently by a group of researchers, with all of the categories adjudicated and a density map ultimately created that represented the numbers of responses in each of the domains.
At the time of the data analysis, 6157 of the total of 7516 COPD PPRN participants had completed the baseline survey and 2286 had completed the longitudinal survey. Overall, 2711 individuals who completed the baseline survey were aged 45 to 64 years, and 3320 individuals were at least 65 years of age. A total of 7178 respondents self-reported as having been diagnosed with COPD, with the remaining 158 respondents likely either caregivers or individuals at risk for COPD.
Survey responses were categorized across 7 domains as follows: Domain 1: family/ social/community research (22.5% of the responses); Domain 2: well-being (20.8% of the responses); Domain 3: curative research (15.0% of the responses); Domain 4: biomedical therapies (14.6% of the responses); Domain 5: policy concerns (10.5% of the responses); Domain 6: holistic therapies (6.0% of the responses); Domain 7: ambiguous comments that could not be translated into concrete research topics (10.7% of the responses).
The investigators concluded that the 6 domains identified in the current analysis differ from previous scientist-led efforts to develop priorities for COPD research, validating the ongoing importance of involving patients and their caregivers in establishing research priorities.
Disclosure: One of the study authors has declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of the author’s disclosures.
Gruß I, McCreary GM, Ivlev I, et al. Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the US. J Patient Rep Outcomes. 2021;5(1):126. doi:10.1186/s41687-021-00399-7