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University of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, NG7 2UH United Kingdom
University of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, NG7 2UH United Kingdom
University of Nottingham, Evidence Based Child Health Group, Division of Child Health, Obstetrics & Gynaecology, E Floor East Block, Queens Medical Centre, Nottingham, NG7 2UH United Kingdom
“Can exercise replace chest physiotherapy?” is a top 10 CF research question.
•
Only 4% of people with CF do no exercise at present.
•
Over half already incorporate exercise into their airway clearance techniques (ACT).
•
Nearly half of people with CF omit ACT when exercising.
•
There is support for a trial replacing some or all of ACT with exercise.
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.
Cystic fibrosis (CF) is characterised by a failure of mucociliary clearance and accumulation of viscid secretions in the airway, leading to recurrent infection. To mitigate this process, CF treatment guidelines recommend the regular use of an airway clearance technique (ACT), with exercise as an adjunct [
Effects of treadmill exercise versus Flutter® on respiratory flow and sputum properties in adults with cystic fibrosis: a randomised, controlled, cross-over trial.
]. These studies suggest that exercise might be a replacement rather than an adjunct to some or all of a patient's ACT programme.
In a recent patient engagement exercise, the James Lind Alliance (JLA) Priority Setting Partnership (PSP) in CF, the patient and clinical community jointly identified the top 10 questions for clinical research in CF [
]. “Can exercise replace chest physiotherapy for people with CF?” was one of these research priorities. Exercise also featured as a topic of importance in the US CF Foundation's Insight CF project [
]. We conducted an online survey in order to understand further how the CF community currently uses exercise to supplement or replace ACT, and to assess the acceptability to patients and healthcare professionals (HCPs) of a clinical trial to investigate replacing ACT with exercise.
2. Methods
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.
3. Results
There were 488 respondents, with 335 (69%) from the lay community. Of these 194 (58%) were people with CF and 141 (42%) family of people with CF. Of the HCPs, 63% were physiotherapists. The greatest number of respondents were from the UK (n = 220, 45%) followed by North America (n = 134, 28%). Median age of respondents with CF was 33 years (range 14–74 years) and median age of those whose parents or family answered on their behalf was 8 years (range 1–33 years). Survey respondent characteristics are summarised in appendix Table A1. Not all respondents answered every question so denominators will vary (supplement 2).
Table A1Survey participant characteristics.
Characteristic
N
%
Total survey participants
488
–
Category of respondent
Lay persons
335
69%
Person with CF
194
(58%)
A parent of a child or children with CF
130
(39%)
Spouse or partner of a person with CF
2
(1%)
Other relative or friend of a person with CF
9
(3%)
Professionals
153
31%
Physiotherapist
93
61%
Dietitian
22
14%
Respiratory Paediatrician
11
7%
Nurse
9
6%
Researcher
5
3%
Respiratory Physician
5
3%
Pharmacist
2
1%
Exercise therapist
2
1%
Junior Doctor
1
1%
Psychologist
1
1%
Physiologist
1
1%
Healthcare professional occupation unknown
1
1%
Geographical location
UK
220
45%
North America
134
27%
Europe (non UK)
19
4%
Australia and New Zealand
7
1%
South America
1
–
Asia
1
–
Africa
1
–
Participant location unknown
105
22%
Age of survey participants
Median age (all participants), years (range)
37 (14–74)
Median age of respondents with CF or those answering on their behalf, years (range)
15.5 (1–74)
Median age of respondents with CF (range)
33 (14–74)
Median age of people with CF whose parents or family answered on their behalf, years (range)
], with walking (moderate intensity) and running (high intensity) the most popular. The majority of people with CF exercise 3–5 times a week with only 10/285 (4%) of lay respondents reporting no exercise (Fig. 1b). Almost all (110/129, 93%) HCPs currently recommend exercise as a way of supporting ACTs and recommend all intensities of exercise (Fig. 1c). A full list of the top 20 exercises with METs are in appendix Table A2.
Fig 1Current exercise habits and intensity in CF. (a) The top five types of exercise currently undertaken by people with CF as indicated by the survey respondents (n = 266). Coded from free text answers where respondents could give more than one exercise type. Corresponding exercise intensity with metabolic equivalence values (METs)
shown for each type of exercise. Cut offs for exercise intensity (in METs) were as follows: light = =<3, moderate = 3–5.9, high = =>6 (6). (b) Frequency of exercise undertaken at present by survey respondents (n = 285). Single response allowed per respondent. (c) Intensity of exercise believed to be beneficial by HCPs (n = 110). Multiple responses allowed per respondent.
People with CF do exercise for many reasons (Fig. 2a), with the most popular being for lung health (204/279, 73%) followed by general health (185/279, 66%) and enjoyment (168/279, 60%). Only two of 277 respondents felt that exercise does not help clear their lungs. Better sputum production (184/275, 67%), better lung function (175/275, 64%) and “feeling better” (173/275, 63%) were the top three ways that people with CF believe exercise is working to clear their lungs (Fig. 2b). Poor health (161/266, 61%), time (38/266, 14%) and weather (15/266, 6%) were the top three factors that stopped people with CF from exercising. Six percent (15/266) replied that nothing ever gets in the way of exercise (Fig. 2c).
Fig 2Drivers behind exercise. (a) Reasons why people with CF exercise (n = 279). Multiple responses allowed per respondent. (b) Effects of exercise (n = 275). Multiple responses allowed per respondent (c) Factors that stop people with CF from exercising (n = 266).). Coded from free text answers where respondents could give more than one reason. (d) Current app/technology use to aid exercise in people with CF (n = 284). Single response allowed per respondent.
Only 35% of respondents with CF (98/284) reported using an App or tracker to monitor physical activity and 68 reported the type of device used. Wearable devices were used by 85% of those who told us what they used (58/68) and Apps by 15% (10/68). Of the wearable devices, Fitbit™ was the most popular (Fig. 2d).
Time spent on ACTs varied among respondents, with, on average, people with CF spending 30mins-one hour a day over two sessions (Fig. 3a and 3b) (range 0–3 h a day over 0–5 sessions a day). Over half of people with CF (163/303, 54%) already incorporate exercise into their ACTs and almost a quarter (73/303, 24%) already do exercise alone for their ACT (Fig. 3c). Almost 60% (180/302) of respondents admit to skipping their ACTs, with “life”, “how I feel” and “time” being the main explanatory themes given for this.
Fig 3Current ACT practice and views on future trials. (a) Average number of sessions spent daily on ACT (n = 302). Single response allowed per respondent. (b) Average time spent daily on ACT (n = 301). Single response allowed per respondent. (c) The use of exercise, ACT and combinations of the two in survey respondents (n = 303). Multiple responses allowed per respondent (d) Numbers reporting dropping an ACT session when they have exercised (n = 267). Single response allowed per respondent. (e) Support for a trial of replacing ACT with exercise (n = 110). Single response allowed per respondent.
Almost half (128/267, 48%) of all respondents may drop their prescribed ACT if they have exercised (Fig. 3d) (including 49% (80/163) of those who incorporate exercise into their ACT). Nearly three quarters (80/110, 73%) of HCPs would support a trial of replacing some or all airway clearance techniques with exercise, with an additional 8% (9/110) willing to consider supporting a trial in selected patients (Fig. 3d). Online supplement 3 shows trial suggestions collected from the CF community.
4. Discussion
Here we have explored current exercise use in people with CF and the influence it has on their ACT regimens. Most people with CF already incorporate exercise into their lives. Activity levels are higher than the general population. Around 20% of the UK population are classed as “inactive” [
] whereas only 4% of our CF population claimed to do no exercise. Almost half of people with CF regularly omit their prescribed ACT if they have exercised. This level of adherence is consistent with previous studies that have estimated adherence levels with CF physiotherapy to be 40–50% [
Adherence to treatment in children and adolescents with cystic fibrosis: a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms.
We found that most HCPs would support a trial replacing ACT with exercise. A recent Cochrane review looking at exercise for CF found 15 studies assessing the effect of exercise on people with CF but all included control groups who were not exercising rather than omitting any ACT [
]. A systematic review comparing current clinical trials with the JLA top 10 did find two trials that loosely matched with “Can exercise replace physiotherapy?” [
Kalaitzis IS, Rowbotham NJ, Smith SJ, Smyth AR Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review. J Cyst Fibros 2019. https://doi.org/10.1016/j.jcf.2019.06.005.
Nathan W. Exercise Alone Versus Exercise And Positive Expiratory Pressure as a Form of Airway Secretion Clearance in Adults with Mild Cystic Fibrosis-Related Respiratory Disease - A Feasibility Study. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369700[Internet]. First posted 15th December 2015.
]. These studies aim to enrol small numbers (17 and 25 patients respectively) and results are, as yet, unpublished. A larger, adequately powered, multicentre trial is needed.
As with all anonymous online surveys, there are limitations. What people self-report and what they actually do can be quite different. However, an advantage of anonymity is that it allows respondents to be more honest without worry of repercussions. People with CF may be more conscious of things they can do to improve their health or it may be that the subsection of the CF population taking part in our survey are more interested in exercise, leading to response bias.
Many people with CF omit ACT if they have exercised. There is support amongst professionals for a trial of replacing current ACT with exercise. The data presented here will allow us to design clinical studies which will begin to answer the question of whether exercise can replace some ACT. Although most of our respondents were from the UK and US over a quarter were from elsewhere in the world. It is therefore reasonable to conclude that the themes and trends noted are applicable to the global CF population.
Funding
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.
Authors’ contributions
All authors were involved in the study design process and contributed in preparation of the manuscript.
Declaration of Competing Interest
NJR has given lectures at meetings sponsored by TEVA. 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.
Acknowledgements
We would like to thank all the people with CF and their families, and the multi-disciplinary CF health care professionals for taking part in this survey. Members of the James Lind Alliance CF2 steering group include: Brownlee K, Collins S, Daniels T, Davies G, Duff AJA, Elliot ZC, Gathercole K, Hurley MN, Leighton PA, Rayner OC, Rowbotham NJ, Smith SJ, Chandran S, Nash EF, Smyth AR (Chair), Wilson P.
Effects of treadmill exercise versus Flutter® on respiratory flow and sputum properties in adults with cystic fibrosis: a randomised, controlled, cross-over trial.
Adherence to treatment in children and adolescents with cystic fibrosis: a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms.
Kalaitzis IS, Rowbotham NJ, Smith SJ, Smyth AR Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review. J Cyst Fibros 2019. https://doi.org/10.1016/j.jcf.2019.06.005.
Nathan W. Exercise Alone Versus Exercise And Positive Expiratory Pressure as a Form of Airway Secretion Clearance in Adults with Mild Cystic Fibrosis-Related Respiratory Disease - A Feasibility Study. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369700[Internet]. First posted 15th December 2015.
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