Information and education provision for patients with bronchiectasis : an exploration of unmet needs and development of a novel resource

Abstract

Bronchiectasis is a chronic lung disease that can create significant symptom and treatment burdens for those affected, and significant costs to the National Health Service. Treatment concordance can be problematic and improvements in interventions are urgently required. There is little patient information available, yet information and education could support patients to self-manage, improve understanding and optimise engagement with treatment. This in turn could facilitate reductions in unscheduled presentations to healthcare services and improvements in longer-term health-related outcomes. A mixed methods approach was taken to this work. Qualitative interviews were conducted with patients and carers to explore and understand their unmet information needs. Using thematic analysis, a core mediating issue emerged: what it means to learn to live your life with bronchiectasis. Embedded within this journey were issues around developing support and coping mechanisms, learning to connect with information, taking back control and developing active partnerships with the medical team. Using the interview findings, a novel information resource was co-developed during a series of workshops with patients and carers. Potential designs, formats and content were discussed and prototypes developed, reviewed and refined. A booklet and a website featuring video content (www.bronchiectasis.me) were produced. A feasibility study (The BRIEF Study, ISRCTN84229105) was subsequently conducted comparing use of this novel information resource to usual care. Feasibility outcomes included recruitment and retention rates and questionnaire completion rates. 62 participants were randomised; 60 completed the study. Recruitment and questionnaire completion rates were excellent. Resource evaluation conducted within the trial was positive and demands for access worldwide were high. By understanding what it means to live with bronchiectasis, a resource that meets users’ needs has been co-developed. The feasibility study indicates that a definitive trial establishing effect on understanding, self-management and health-related outcomes would be feasible and that the resource is credible and of high quality.