"A good day is just being able to breathe": Aligning COPD research with patient needs, a qualitative study

Chronic obstructive pulmonary disease (COPD) is a common and impactful disease that is the target of a large portfolio of clinical research. However, there is limited understanding of how individuals with COPD perceive trial designs, outcomes, and intervention acceptability. The objective of this project was to explore the perspectives and priorities of patients and their caregivers toward COPD-focused clinical research.

Semi-structured interviews were conducted with participants living with COPD and their caregivers using the Theoretical Framework of Acceptability (TFA) to guide data collection and analysis. Interviews were transcribed and coded using qualitative analysis software and analyzed using an inductive thematic approach.

Fifteen interviews were performed. Key themes included participant preference for outcome measures that directly impact daily living, such as mental wellness and physical function. Participants highlighted the need for research data to be actionable, advocating for health insights to be shared with participants and their healthcare providers. Study engagement was influenced by the perceived burden and complexity of interventions as well as their direct relevance to patients. Patients favored research designs that minimize physical and logistical challenges. Lastly, participants desired greater involvement in the research design process.

Aligning COPD research with patient priorities requires incorporating meaningful outcome measures, reducing participation burdens, and fostering ongoing engagement. Integrating patient-centered approaches in study design can enhance recruitment, adherence, and the real-world impact of COPD interventions.