Abstract
Airway clearance techniques (ACTs) are recommended in cystic fibrosis (CF) to prevent accumulation of secretions and lung infection. “Can exercise replace chest physiotherapy for people with CF?” is one of the CF community's top 10 research questions. We conducted an online survey of the CF community to gather data on current ACT use, recommendations, reported adherence levels and exercise strategies used. There were 488 respondents: 194 (40%) people with CF (pwCF), 141 (29%) family and 153 (31%) healthcare professionals (HCPs) (mostly physiotherapists). Only 10/285 (4%) of pwCF do no exercise at present and 163/303 (54%) already incorporate exercise into ACTs. ACTs were omitted by 128/267 (48%) of pwCF when they exercised. Nearly all (110/129, 93%) of HCPs currently recommend exercise to support ACTs. A trial replacing some or all ACTs with exercise, was supported by 80/110 (73%) of HCPs, with an additional 9/110 (8%) willing to consider in selected patients.
| Original language | English |
|---|---|
| Pages (from-to) | e19-e24 |
| Number of pages | 5 |
| Journal | Journal of Cystic Fibrosis |
| Volume | 19 |
| Issue number | 4 |
| Early online date | 15 Nov 2019 |
| DOIs | |
| Publication status | Published - Jul 2020 |
| Externally published | Yes |
Bibliographical note
Funding Information:This work was supported by the UK CF 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.
Funding Information:
This work was led by a steering group representative of the CF community (lay and professional) and supported by the UK National Institute for Health Research (NIHR) under the title ?James Lind CF2?. An online questionnaire was co-produced using SurveyMonkey? to help us understand which ACTs are currently undertaken by people with CF and recommended by HCPs, current levels of reported adherence and exercise strategies used (See online supplement 1). The survey was designed to be inclusive, with no minimum age or restrictions on location, and was open over 5 weeks in December 2018-January 2019. There were separate streams for lay and professional respondents to complete. It was promoted via our Twitter? account (@questionCF), professional networks, UK CF Trust, US CF Foundation Community Voice group and the NIHR. The survey data were downloaded to Excel for quantitative analysis (closed questions) and NVivo for thematic analysis (free text comments) in order to generate topics which represented recurring themes.This work was supported by the UK CF 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.
Publisher Copyright:
© 2019 European Cystic Fibrosis Society
Keywords
- Airway clearance techniques
- Clinical trial
- Co-production
- Cystic fibrosis
- Exercise
- Priority setting
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Pulmonary and Respiratory Medicine
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