Co-developing a qualitative study with expert patients to explore experiences of supported asthma self-management in the IMP²ART trial

Introduction: The IMPlementing IMProved Asthma self-management as RouTine (IMP²ART) trial is testing the effectiveness of a theoretically-informed strategy to improve implementation of supported self-management in general practice. To understand the overall impact of IMP²ART it is important to capture patient experiences of supported self-management, so we worked with our Patient and Public Involvement (PPI) colleagues to explore how a study should be conducted. Aim: To co-develop research themes with PPI colleagues to inform the design of a qualitative patient interview study to be conducted within the IMP²ART trial. Methods: Colleagues were purposively recruited from the Asthma UK Centre for Applied Research PPI Group and contributed on-line semi-structured discussions. Discussions were recorded so that suggested themes could be identified and potential questions prepared for topic guides in the proposed qualitative study. Results: Eight PPI colleagues contributed. They expressed interest and support for the proposed qualitative study. Healthcare usage did not consistently reflect perceptions of asthma control. Self-management encompassed lifestyle changes broader than medication adherence, and patients make trade-offs to avoid unscheduled care to manage asthma in the context of their lives. Professional support for self-management is not viewed as essential for all patients and guidance is not routinely welcomed, though action plans are generally considered useful. The relationship with healthcare professionals is ideally a partnership to which patients bring expertise of their own asthma and professionals contribute resources and specialist knowledge. Discussion: Discussions with PPI colleagues suggested four themes on supported self-management that could be explored in future qualitative interviews: (1) diverse perceptions of well-controlled asthma; (2) mixed ideas of expertise and responsibility; (3) tick-box reviews could be a barrier to self-management; and (4) action plans are universally useful. Collaborating with PPI colleagues on study plans and research themes enhanced relevance of research and informed an initial analysis framework. Funder:NIHR PGfAR[RP-PG-1016-20008]