Bronchiectasis Information and Education: a randomised, controlled feasibility trial

Abstract

Background: There has been comparatively little patient information about bronchiectasis, a chronic lung disease with rising prevalence. Patients want more information, which could improve their understanding and selfmanagement. A novel information resource meeting identified needs has been co-developed in prior work. We sought to establish the feasibility of conducting a multi-centre randomised controlled trial to determine effect of the information resource on understanding, self-management and health outcomes.Methods/design: We conducted an unblinded, single-centre, randomised controlled feasibility trial with two parallel groups (1:1 ratio), comparing a novel patient information resource with usual care in adults with bronchiectasis. Integrated qualitative methods allowed further evaluation of the intervention and trial process. The setting was two teaching hospitals in North East England. Participants randomised to the intervention group received the information resource (website and booklet) and instructions on its use. Feasibility outcome measures included willingness to enter the trial, in addition to recruitment and retention rates. Secondary outcome measures (resource use and satisfaction, quality of life, unscheduled healthcare presentations, exacerbation frequency, bronchiectasis knowledge and lung function) were recorded at baseline, 2 weeks and 12 weeks. Results: Sixty-two participants were randomised (control group = 30; intervention group = 32). Thirty-eight (61%) were female, and the participants' median age was 65 years (range 15-81). Median forced expiratory volume in 1 s percent predicted was 68% (range 10-120). Sixty-two of 124 (50%; 95% CI, 41-59%) of potentially eligible participants approached were recruited. Sixty (97%) of 62 participants completed the study (control group, 29 of 30 [97%]; 95% CI, 83-99%; 1 unrelated death; intervention group, 31 [97%] of 32; 95% CI, 84-99%; 1 withdrawal). In the intervention group, 27 (84%) of 32 reported using the information provided, and 25 (93%) of 27 of users found it useful, particularly the video content. Qualitative data analysis revealed acceptability of the trial and intervention. Web analytics recorded over 20,000 page views during the 16-month study period. Conclusion: The successful recruitment process, high retention rate and study form completion rates indicate that it appears feasible to conduct a full trial based on this study design. Worldwide demand for online access to the information resource was high.

Self-management programmes for adult patients with bronchiectasis: a systematic review and realist synthesis

“…There were studies that could have further refined the programme theories but were excluded due to ineligibility. Noteworthy studies that were omitted included one multi-faceted qualitative study [55] that explored the factors that influenced adherence to self-management strategies and three studies that only evaluated a single intervention [54,56,57]. The overall findings should be viewed as provisional and non-exhaustive due to limited iterative searching resulting from a lack of resources.…”

‘It’s not one size fits all’: a qualitative study of patients’ and healthcare professionals’ views of self-management for bronchiectasis

“…Feasibility and high demand for online access to a web-based bronchiectasis information resource has been demonstrated, but this is yet to be proven in a full clinical trial. 28 The UK Government's digital inclusion strategy identified key barriers including age and social deprivation, that should be considered in design of self-management programmes. 29 Availability of resources was a key factor with a scarcity of high-quality information and evidence of a 'make do' culture.…”

Using Telemedicine to Provide Education for the Symptomatic Patient with Chronic Respiratory Disease

“…Specifically, participants in these studies were provided with a technology platform to access information and activities that develop new knowledge, skills, and attitudes for self-management of chronic respiratory disease (Table 1). The platforms have multiple forms, i.e., websites [5][6][7][8][9][10][11], apps [12][13][14], "serious games" [15], or virtual reality environments [16], incorporating activities for learning information and skills that can be applied to managing their condition.…”

“…For all studies that measured patient satisfaction, technology-enabled patient education was a positive experience by the majority of participants. The majority of participants would recommend the technology-enabled patient education to peers, finding the webbased and application-based education kept them motivated, was easy to use, and was relevant and perceived their knowledge and skills to have improved [5,6,9,12,[14][15][16]21,23]. Participants also found that the technology solution meant the information was always readily available and not able to be misplaced, and this was very helpful [6].…”