O'Connor Laurel, Ferranto Julia, Harne Anuska Ganesh, Dunkel Leah, Lindenauer Peter, Miller Bruce, Mosher Christopher, Martinez Fernando, Soni Apurv
Program in Digital Medicine, Department of Medicine, University of Massachusetts Chan Medical School, Worcester, Massachusetts, United States of America.
Department of Healthcare Delivery and Population Sciences and Department of Medicine, University of Massachusetts Chan Medical School-Baystate, Springfield, Massachusetts United States of America.
PLoS One. 2025 Sep 16;20(9):e0331403. doi: 10.1371/journal.pone.0331403. eCollection 2025.
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.
慢性阻塞性肺疾病（COPD）是一种常见且影响重大的疾病，是大量临床研究的目标。然而，对于慢性阻塞性肺疾病患者如何看待试验设计、结果和干预可接受性的了解有限。本项目的目的是探讨患者及其护理人员对以慢性阻塞性肺疾病为重点的临床研究的观点和优先事项。
采用可接受性理论框架（TFA）对慢性阻塞性肺疾病患者及其护理人员进行半结构化访谈，以指导数据收集和分析。访谈内容进行转录，并使用定性分析软件编码，采用归纳主题分析法进行分析。
进行了15次访谈。关键主题包括参与者对直接影响日常生活的结果指标的偏好，如心理健康和身体功能。参与者强调研究数据需要具有可操作性，主张与参与者及其医疗服务提供者分享健康见解。研究参与度受干预措施的感知负担和复杂性以及它们与患者的直接相关性影响。患者倾向于将身体和后勤挑战降至最低的研究设计。最后，参与者希望更多地参与研究设计过程。
使慢性阻塞性肺疾病研究与患者优先事项保持一致需要纳入有意义的结果指标、减轻参与负担并促进持续参与。将以患者为中心的方法纳入研究设计可以提高慢性阻塞性肺疾病干预措施的招募率、依从性和实际效果。
