Abstract
BackgroundThere is currently little patient information on bronchiectasis, a chronic lung disease with rising prevalence. Previous work shows that patients and their families want more information, which could potentially improve their understanding and self-management. Using interviews and focus groups, we have co-developed a novel patient and carer information resource, aiming to meet their identified needs.The aims and objectives are:1. To assess the potential impact of the information resource2. To evaluate and refine the intervention3. To establish the feasibility of carrying out a multi-centre randomised controlled trial to determine its effect on understanding, self-management and health outcomesMethods/designThis is a feasibility study, with a single-centre, randomised controlled trial design, comparing use of a novel patient information resource to usual care in bronchiectasis. Additionally, patients and carers will be invited to focus groups to discuss their views on both the intervention itself and the trial process.The study duration for each participant will be 3 months from the study entry date. A total of 70 patients will be recruited to the study, and a minimum of 30 will be randomised to each arm. Ten participants (and their carers if applicable) will be invited to attend focus groups on completion of the study visits. Participants will be adults with bronchiectasis diagnosed as per national bronchiectasis guidelines.Once consented, participants will be randomised to the intervention or control arm using random permuted blocks to ensure treatment group numbers are evenly balanced. Randomisation will be web-based. Those randomised to the intervention will receive the information resource (website and booklet) and instructions on its use. Outcome measures (resource satisfaction, resource use and alternative information seeking, quality of life questionnaires, unscheduled healthcare visits, exacerbation frequency, bronchiectasis knowledge questionnaire and lung function tests) will be recorded at baseline, 2 weeks and 3 months.DiscussionAll outcome measures will be used in assessing feasibility and acceptability of a future definitive trial. Feasibility outcomes include recruitment, retention and study scale form completion rates. Focus groups will strengthen qualitative data for resource refinement and to identify participant views on the trial process, which will also inform feasibility assessments. Questionnaires will also be used to evaluate and refine the resource.Trial registrationISRCTN84229105Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1330-4) contains supplementary material, which is available to authorized users.
Highlights
There is currently little patient information on bronchiectasis, a chronic lung disease with rising prevalence
As the study and intervention have been co-developed with potential users, we hope this will make the trial process and use of the resource straightforward and beneficial
Analysis of outcome measures will begin to determine impact of this novel information resource on patient knowledge and confidence to self-manage and inform development of a definitive trial to determine the effect on disease stability
Summary
There is currently little patient information on bronchiectasis, a chronic lung disease with rising prevalence. Previous work shows that patients and their families want more information, which could potentially improve their understanding and self-management. Bronchiectasis has various potential aetiologies including immune deficiency syndromes, chronic asthma, chronic obstructive pulmonary disease, ciliary dysfunction and post-infectious causes, yet studies have found that between a quarter and half of cases are idiopathic [1, 2]. Studies demonstrate that up to 50 % of patients with chronic obstructive pulmonary disease (COPD) have co-existent bronchiectasis [8]. There are approximately 1,000,000 patients with COPD in the UK [9]; there is potential for a significant increase in case finding of COPD-associated bronchiectasis over the coming years
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