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What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?

Calthorpe, Rebecca J; Smith, Sherie J; Rowbotham, Nicola J; Leighton, Paul A; Davies, Gwyneth; Daniels, Tracey; Gathercole, Katie; Allen, Lorna; Elliott, Zoe C; Smyth, Alan R

What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment? Thumbnail


Authors

Rebecca J Calthorpe

SHERIE SMITH sherie.smith@nottingham.ac.uk
Cochrane Systematic Reviewer

Nicola J Rowbotham

Paul A Leighton

Gwyneth Davies

Tracey Daniels

Katie Gathercole

Lorna Allen

Zoe C Elliott

Alan R Smyth



Abstract

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.

Journal Article Type Article
Acceptance Date May 29, 2020
Online Publication Date Aug 16, 2020
Publication Date 2020-08
Deposit Date Oct 7, 2020
Publicly Available Date Oct 7, 2020
Journal BMJ Open Respiratory Research
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 7
Issue 1
Article Number e000601
DOI https://doi.org/10.1136/bmjresp-2020-000601
Public URL https://nottingham-repository.worktribe.com/output/4945229
Publisher URL https://bmjopenrespres.bmj.com/content/7/1/e000601

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