Introduction “What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?” was identified as one of the James Lind Alliance Priority Setting Partnership’s top 10 research questions in cystic fibrosis (CF). Using electronic questionnaires, we aimed to gain a deeper understanding of this research priority.
Method The work was led by the steering group representative of the UK CF community consisting of patients, carers and healthcare professionals (HCPs). Electronic questionnaires were completed over a 4-week period and promoted via online forums such as Twitter, the UK CF Trust and US CF Foundation websites and via professional networks. Analysis of the closed questions was completed using Microsoft Excel, with keyword analysis and the final thematic analysis completed using NVivo software.
Results There were 313 respondents; 176/313 (56%) were from people with CF and their families. HCPs comprised of 10 professional groups accounting for 137/313 (44%) of respondents, with global involvement of participants with the majority from the UK. Common themes identified as impacting on adherence included: having no time, treatment burden, competing life demands, fatigue and the patient’s general health. Having a routine was identified as the most frequently used motivational strategy, valued by both the patient and professional community. However, some strategies were valued more by HCPs than used in practice by patients; these included the use of short-term goal setting and technology use.
Conclusion Adherence to treatment is crucial, however it is often suboptimal and strategies valued by HCPs to promote adherence are not always shared by patients. To promote adherence clinicians and researchers should be mindful that in a condition where treatment burden and time pressures are considerable, any interventions should focus on simplifying care and reducing treatment burden.
- cystic fibrosis
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Contributors All authors were involved in the study design process and contributed in the preparation of this manuscript.
Funding This work was supported by the UK Cystic Fibrosis Trust. NJR is an NIHR Academic Clinical Fellow at University of Nottingham. GD is an NIHR Clinical Trials Fellow and was previously supported by a NIHR Clinical Lectureship at UCL.
Competing interests NR has given lectures at meetings sponsored by Teva and received non-financial support from Teva and Vertex. AS has provided consultancy for Vertex and holds a current unrestricted research grant from Vertex. He has taken part in clinical trials sponsored by Vertex, Raptor and Insmed. He has given lectures at meetings sponsored by Teva and Vertex. GD has given lectures at meetings sponsored by Chiesi. GD is a collaborator on Project Fizzyo. TD has completed consultancy work for Zambon who supply INeb nebuliser systems which have adherence monitoring capacity.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request. Data are available on request from Professor Alan Smyth, Division of Child Health, Obstetrics & Gynaecology, Evidence Based Child Health Group, Obstetrics & Gynaecology, Queens Medical Centre, University of Nottingham, E FLoor East Block, Nottingham, NG7 2UH, UK
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