Feasibility and implementation of a personalized, web-based exercise intervention for people with cystic fibrosis for 1 year

Abstract Background Regular participation in exercise is important for people with cystic fibrosis (CF). Therefore, we implemented a personalized, web-based exercise intervention over the course of one year for people with CF. The aims were to investigate the feasibility of the intervention and to evaluate changes in exercise participation, lung function, and exercise capacity. Methods In total, 11/17 participants [aged 12–52 years; FEV1%pred. 72.3 (SD: 17.3)] were included in the final data analysis. Every week, the participants received an individual training recommendation at the start and uploaded their training report on our website at the end of each week. The number of training minutes and sessions performed were analyzed over 13 four-week training sections. The participation in exercise (physical activity questionnaire), lung function and exercise capacity were assessed at baseline (T0), after 12 weeks (T1) and after 52 weeks (T2). Results A training duration of 178 min (SD: 75.5) and 3.3 (SD: 0.89) training sessions could be achieved weekly. In the first four-week training section, the participants performed 137.31 (SD: 95.7) minutes of training, with an increase of 42% in the third training section (195.01, SD: 134.99). Minutes of training reported on the questionnaire increased by 39.7% from T0 (179.38 min, SD: 120.9) to T1 (250.63 min, SD: 124.1) but decreased at T2 (166.88, SD: 155.4). There were slight decreases in lung function (FEV1 − 3.9%pred.; FVC − 1.9%pred.) and slight increases in exercise capacity (VO2peak + 1.5 ml/min/kg; six-minute-walk-test-distance + 26 m). Noticeably, five participants experienced deteriorations in their FEV1 of more than 5% but simultaneously experienced improvements in the parameters of exercise capacity of more than 5% throughout the year. Conclusions The web-based concept was feasible for the participants over the course of a year and supported exercise participation. The improvement in exercise capacity due to increased exercise participation over a prolonged period of time, despite a decrease in lung function, should be further investigated. Finally, if integrated into usual care, this approach could facilitate the prescription of regular personalized exercise and promote exercise participation in the daily lives of people with CF.

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Inspiratory Muscle Training Improves Lung Function and Exercise Capacity in Adults With Cystic Fibrosis

Yearbook of Pulmonary Disease ◽

10.1016/s8756-3452(08)70051-3 ◽

2006 ◽

Vol 2006 ◽

pp. 56-57

Author(s):

Sandra K. Willsie

Keyword(s):

Cystic Fibrosis ◽

Lung Function ◽

Exercise Capacity ◽

Inspiratory Muscle ◽

Inspiratory Muscle Training ◽

Muscle Training

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WS04.3 Lung function as a determinant of the evolution of exercise capacity over a three-year follow-up period in patients with cystic fibrosis

Journal of Cystic Fibrosis ◽

10.1016/s1569-1993(21)00935-8 ◽

2021 ◽

Vol 20 ◽

pp. S7-S8

Author(s):

N. Evangelista Campos ◽

F.M. Vendrusculo ◽

I. Silveira de Almeida ◽

N. Acosta Becker ◽

M.V. Fagundes Donadio

Keyword(s):

Cystic Fibrosis ◽

Lung Function ◽

Exercise Capacity

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How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey

BMJ Open Respiratory Research ◽

10.1136/bmjresp-2020-000614 ◽

2020 ◽

Vol 7 (1) ◽

pp. e000614

Author(s):

Sherie Smith ◽

Nicola Rowbotham ◽

Gwyneth Davies ◽

Katie Gathercole ◽

Sarah J Collins ◽

...

Keyword(s):

Cystic Fibrosis ◽

Online Survey ◽

Gastrointestinal Symptoms ◽

Daily Lives ◽

Web Based ◽

Qualitative Survey ◽

Gi Symptoms ◽

James Lind Alliance ◽

Adults And Children ◽

Almost All

IntroductionRelieving gastrointestinal (GI) symptoms was identified as a ‘top ten’ priority by our James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). We conducted an online survey to find out more about the effect of GI symptoms in CF.MethodsWe co-produced an online survey distributed to the CF community via web-based platforms. The survey consisted of open and closed questions designed to help us learn more about the effects of GI symptoms for people with CF (pwCF). We analysed the data using descriptive statistics and thematic analysis. We promoted the survey via social media and web-based platforms which allowed respondents from any country to take part. Our participants came from the CF community, including: adults and children with CF, parents and close family of pwCF and healthcare professionals (HCPs) working with pwCF.ResultsThere were 276 respondents: 90 (33%) pwCF, 79 (29%) family, 107 (39%) HCPs. The most commonly reported symptoms by lay respondents were stomach cramps/pain, bloating and a ‘combination of symptoms’. The top three symptoms that HCPs said were reported to them were reduced appetite, bloating and constipation. Almost all (94% (85/90)) HCPs thought medications helped to relieve GI symptoms but only 58% (82/141) of lay respondents agreed.ConclusionsOur survey has shown that GI symptoms among our participants are prevalent and intrude on daily lives of pwCF. There is a need for well-designed clinical studies to provide better evidence for management of GI symptoms and complications.

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Inhaled beta-agonists improve lung function but not maximal exercise capacity in cystic fibrosis

Journal of Cystic Fibrosis ◽

10.1016/j.jcf.2004.11.004 ◽

2005 ◽

Vol 4 (2) ◽

pp. 101-105 ◽

Cited By ~ 21

Author(s):

Jonathan D. Dodd ◽

Sinead C. Barry ◽

Leslie E. Daly ◽

Charles G. Gallagher

Keyword(s):

Cystic Fibrosis ◽

Lung Function ◽

Exercise Capacity ◽

Maximal Exercise ◽

Improve Lung Function ◽

Beta Agonists ◽

Maximal Exercise Capacity

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Applicability of a Web-Based, Individualized Exercise Intervention in Patients With Liver Disease, Cystic Fibrosis, Esophageal Cancer, and Psychiatric Disorders: Process Evaluation of 4 Ongoing Clinical Trials

JMIR Research Protocols ◽

10.2196/resprot.8607 ◽

2018 ◽

Vol 7 (5) ◽

pp. e106 ◽

Cited By ~ 8

Author(s):

Daniel Pfirrmann ◽

Nils Haller ◽

Yvonne Huber ◽

Patrick Jung ◽

Klaus Lieb ◽

...

Keyword(s):

Cystic Fibrosis ◽

Clinical Trials ◽

Esophageal Cancer ◽

Liver Disease ◽

Psychiatric Disorders ◽

Process Evaluation ◽

Exercise Intervention ◽

Web Based

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Heart rate variability, exercise capacity and levels of daily physical activity in children and adolescents with mild-to-moderate cystic fibrosis

Hong Kong Physiotherapy Journal ◽

10.1142/s1013702522500019 ◽

2021 ◽

pp. 1-10

Author(s):

Pitiguara de Freitas Coelho ◽

Roberta Ribeiro Batista Barbosa ◽

Rodrigo dos Santos Lugao ◽

Fernanda Mayrink Gonçalves Liberato ◽

Pâmela Reis Vidal ◽

...

Keyword(s):

Physical Activity ◽

Cystic Fibrosis ◽

Heart Rate ◽

Heart Rate Variability ◽

Lung Function ◽

Children And Adolescents ◽

Exercise Capacity ◽

Pancreatic Insufficiency ◽

Daily Physical Activity ◽

Rr Intervals

Background: Autonomic nervous system balance is altered in cystic fibrosis (CF), although its influence on physical fitness has been poorly explored. Objective: This study aimed to evaluate the association of heart rate variability (HRV) with exercise capacity and levels of daily physical activity in children and adolescents with mild-to-moderate CF. Methods: A cross-sectional study including individuals with CF aged 6–18 years, not under CFTR modulator therapy, was performed. Sociodemographic (age, sex) and clinical information (airway colonization, pancreatic insufficiency, and genotyping) were collected. In addition, exercise capacity (modified shuttle test — MST), lung function (spirometry), body composition (bioimpedance), levels of daily physical activity (5-day accelerometer), and HRV (both at rest and during the MST) were evaluated. Results: 30 individuals (20 females) aged [Formula: see text] years, mean FEV[Formula: see text]%, were included. A sympathovagal balance (LF/HF) increase ([Formula: see text]) during the MST was shown, indicating a predominance of sympathetic modulation. The standard deviation of all RR intervals (SDNN) and the high frequency (HF) index during exercise correlated significantly with FEV1 ([Formula: see text], [Formula: see text] and [Formula: see text], [Formula: see text]; respectively). MST distance also correlated positively and significantly with SDNN ([Formula: see text], [Formula: see text]), square root of the mean of the sums of squares of frequencies between RR intervals greater than 50[Formula: see text]ms — RMSSD ([Formula: see text], [Formula: see text]), low frequency — LF ([Formula: see text], [Formula: see text]), HF ([Formula: see text], [Formula: see text]), dispersion of points perpendicular to the short-term identity line — SD1 ([Formula: see text], [Formula: see text]) and negatively with LF/HF ([Formula: see text], [Formula: see text]). Regarding daily physical activity, SDNN at rest ([Formula: see text], [Formula: see text]) and exercise ([Formula: see text], [Formula: see text]) showed positive correlations with time in moderate-to-vigorous activities. When normalizing the SDNN and classifying individuals as normal or altered, those presenting altered SDNN showed poorest FEV1 ([Formula: see text]) and lower exercise capacity ([Formula: see text]). Conclusion: HRV correlates with lung function, exercise capacity and levels of daily physical activity in children and adolescents with CF. The study highlights the influence of CF on autonomic function and suggests HRV measurement as an easy tool to be used in clinical settings as an alternative marker to monitor CF individuals.

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Higher Mobility Scores in Patients with Cystic Fibrosis Are Associated with Better Lung Function

Pulmonary Medicine ◽

10.1155/2015/423219 ◽

2015 ◽

Vol 2015 ◽

pp. 1-6 ◽

Cited By ~ 4

Author(s):

Aneesha Thobani ◽

Jessica A. Alvarez ◽

Shaina Blair ◽

Kaila Jackson ◽

Eric R. Gottlieb ◽

...

Keyword(s):

Physical Activity ◽

Cystic Fibrosis ◽

Lung Function ◽

Observational Study ◽

Outcome Measures ◽

Prospective Cohort ◽

Care Center ◽

Life Space ◽

Specialized Care ◽

One Year

Objective.The purpose of this study was to determine whether mobility and physical activity were associated with lung function in adults with cystic fibrosis (CF).Design.This was a prospective cohort observational study in an urban, academic, specialized care center. Participants were ambulatory, nonhospitalized adults with CF.Main Outcome Measures.Mobility was assessed monthly by the Life-Space Assessment (LSA) questionnaire and quarterly by pedometer. Lung function was assessed by spirometry.Results.Twenty-seven subjects participated. Subjects recorded mean pedometer steps of 20,213 ± 11,331 over three days and FEV1% predicted of 77.48% ± 22.60% over one year. The LSA score at enrollment was correlated with initial pedometer steps (r=0.42andP=0.03), and mean LSA score over one year was correlated with mean number of steps (r=0.51andP=0.007). LSA mobility and pedometer scores were correlated with FEV1% predicted at enrollment and throughout the study.Conclusions.Mobility and physical activity measured by LSA questionnaire and pedometer are positively associated with lung function in adults with CF. This study confirms the importance of mobility and physical activity and supports the utility of a simple office-based questionnaire as a measure of mobility in adults with CF.

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Variation in lung function is associated with worse clinical outcomes in cystic fibrosis

Jornal Brasileiro de Pneumologia ◽

10.1590/s1806-37562015000000006 ◽

2015 ◽

Vol 41 (6) ◽

pp. 509-515 ◽

Cited By ~ 4

Author(s):

João Paulo Heinzmann-Filho ◽

Leonardo Araujo Pinto ◽

Paulo José Cauduro Marostica ◽

Márcio Vinícius Fagundes Donadio

Keyword(s):

Cystic Fibrosis ◽

Lung Function ◽

Clinical Outcomes ◽

Hospital Admissions ◽

Antibiotic Use ◽

Coefficient Of Determination ◽

First Year ◽

The Third ◽

One Year ◽

Fev1 Decline

ABSTRACT OBJECTIVE: To determine whether the variation in lung function over one year is associated with worse clinical outcomes, as well as with a decline in lung function in the following years, in patients with cystic fibrosis (CF). METHODS: This was a retrospective study involving CF patients (4-19 years of age), evaluated over a three-year period. We evaluated demographic characteristics, chronic Pseudomonas aeruginosa infection, antibiotic use, hospitalization, six-minute walk distance (6MWD), and lung function. The inclusion criterion was having undergone pulmonary function testing at least three times in the first year and at least once in each of the next two years. RESULTS: We evaluated 35 CF patients. The variation in FEV1 in the first year (FEV1) was greater among those who, in the third year, showed reduced FEV1, had a below-average 6MWD, or were hospitalized than among those with normal FEV1, normal 6MWD, or no hospital admissions, in that same year (p < 0.05), although no such difference was found for antibiotic use in the third year. Subjects showing a FEV1 ≥ 10% also showed a greater decline in FEV1 over the two subsequent years (p = 0.04). The FEV1 also showed an inverse correlation with absolute FEV1 in the third year (r = −0.340, p = 0.04) and with the rate of FEV1 decline (r = −0.52, p = 0.001). Linear regression identified FEV1 as a predictor of FEV1 decline (coefficient of determination, 0.27). CONCLUSIONS: Significant variation in lung function over one year seems to be associated with a higher subsequent rate of FEV1 decline and worse clinical outcomes in CF patients. Short-term FEV1 might prove useful as a predictor of CF progression in clinical practice.

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