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

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...

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Main Authors: Gwyneth Davies, Paul A Leighton, Alan R Smyth, Rebecca J Calthorpe, Sherie J Smith, Nicola J Rowbotham, Tracey Daniels, Zoe C Elliott
Format: Article
Language:English
Published: BMJ Publishing Group 2020-09-01
Series:BMJ Open Respiratory Research
Online Access:https://bmjopenrespres.bmj.com/content/7/1/e000601.full
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author Gwyneth Davies
Paul A Leighton
Alan R Smyth
Rebecca J Calthorpe
Sherie J Smith
Nicola J Rowbotham
Tracey Daniels
Zoe C Elliott
author_facet Gwyneth Davies
Paul A Leighton
Alan R Smyth
Rebecca J Calthorpe
Sherie J Smith
Nicola J Rowbotham
Tracey Daniels
Zoe C Elliott
author_sort Gwyneth Davies
collection DOAJ
description 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.
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spelling doaj-art-cff6e14318ab4a90a79faca45fe6b1c72025-08-20T02:22:28ZengBMJ Publishing GroupBMJ Open Respiratory Research2052-44392020-09-017110.1136/bmjresp-2020-000601What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?Gwyneth Davies0Paul A Leighton1Alan R Smyth2Rebecca J Calthorpe3Sherie J Smith4Nicola J Rowbotham5Tracey Daniels6Zoe C Elliott7Physiotherapy, Respiratory, Critical Care and Anaesthesia Section, UCL Great Ormond Street Institute of Child Health, London, UKNIHR Research Design Service for the East Midlands, University of Nottingham, Nottingham, UKUniversity of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, UKUniversity of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, UKUniversity of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, UKUniversity of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, UKDepartment of Physiotherapy, York Hull Adult Cystic Fibrosis Unit, York Teaching Hospital NHS Foundation Trust, York, North Yorkshire, UKParent of Children with Cystic Fibrosis, Nottingham, UKIntroduction “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.https://bmjopenrespres.bmj.com/content/7/1/e000601.full
spellingShingle Gwyneth Davies
Paul A Leighton
Alan R Smyth
Rebecca J Calthorpe
Sherie J Smith
Nicola J Rowbotham
Tracey Daniels
Zoe C Elliott
What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
BMJ Open Respiratory Research
title What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
title_full What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
title_fullStr What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
title_full_unstemmed What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
title_short What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?
title_sort what effective ways of motivation support and technologies help people with cystic fibrosis improve and sustain adherence to treatment
url https://bmjopenrespres.bmj.com/content/7/1/e000601.full
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