Introduction There is currently limited information about bronchiectasis available to patients. We co-developed a novel patient and carer information resource, based on needs identified in previous work.1 The resource was evaluated in the BRIEF study with the following objectives:-
1. To establish the feasibility of carrying out a multi-centre randomised controlled trial (RCT) to determine effect on understanding, self-management and health outcomes.
2. To evaluate and refine the intervention.
Methods This was a feasibility study with a single-centre RCT design, comparing use of the resource to usual care in bronchiectasis.2
Adults with bronchiectasis were recruited from respiratory clinics in the North of England. Those randomised to the intervention received the information resource (website www.bronchiectasis.me and booklet). Outcome measures (resource satisfaction, bronchiectasis knowledge, quality of life, unscheduled healthcare visits, exacerbation frequency, and lung function) were recorded at baseline, 2 weeks and 3 months. Feasibility outcomes included recruitment, retention and study form completion rates. A patient and carer focus group was held to discuss the intervention and the trial process.
Results Recruitment rate was 50% of those assessed for eligibility (See Figure). Questionnaire completion rates were excellent with very few missing data. 24 participants were male and 38 female. Median age was 63 years (range 18–82).
Participants reported using the information provided, and feedback was positive, particularly highlighting the usefulness of the video clips and self-management information. The most popular pages of the website included diet and lifestyle advice, advice for carers, and symptoms and prognosis. Focus group data reinforced users’ positive experiences of the resource and the trial process. Full analysis is ongoing.
Discussion and conclusions We have co-developed a multi-format, accessible information resource that could be made widely available outside of the specialist clinic setting. The BRIEF study suggests larger, definitive studies using interventions to improve understanding, compliance and self-management are warranted. Full results of the feasibility study are expected by December 2016.
Hester KLM, Newton J, De Soyza A, et al. Living your life with bronchiectasis: an exploration of patients and carers information needs informing development of a novel information resource. Thorax 2015;70(suppl. 3):A178.
Hester KLM, Newton J, Rapley T, et al. Evaluation of a novel information resource for patients with bronchiectasis: study protocol for a randomised controlled trial. Trials 2016;17:210.