scholarly journals P366 A 12-week, individualised, web-based exercise intervention is feasible and effective for people with cystic fibrosis

2019 ◽  
Vol 18 ◽  
pp. S161
Author(s):  
B. Hillen ◽  
D. Pfirrmann ◽  
P. Simon ◽  
K. Poplawska
Keyword(s):  
Cystic Fibrosis ◽  
Exercise Intervention ◽  
Web Based

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

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Barlo Hillen ◽  
Perikles Simon ◽  
Sebastian Schlotter ◽  
Oliver Nitsche ◽  
Viola Bähner ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Lung Function ◽  
Exercise Capacity ◽  
Exercise Intervention ◽  
Daily Lives ◽  
Web Based ◽  
Exercise Participation ◽  
One Year ◽  
Test Distance ◽  
Activity Questionnaire

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.

scholarly journals 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 (Preprint)

2017 ◽  
Author(s):  
Daniel Pfirrmann ◽  
Nils Haller ◽  
Yvonne Huber ◽  
Patrick Jung ◽  
Klaus Lieb ◽  
...  
Keyword(s):  
Physical Activity ◽  
Cystic Fibrosis ◽  
Clinical Trials ◽  
Liver Disease ◽  
Activity Level ◽  
Daily Routine ◽  
Intervention Period ◽  
Web Based ◽  
Significant Change ◽  
Disease Specific

BACKGROUND In the primary and secondary prevention of civilization diseases, regular physical activity is recommended in international guidelines to improve disease-related symptoms, delay the progression of the disease, or to enhance postoperative outcomes. In the preoperative context, there has been a paradigm shift in favor of using preconditioning concepts before surgery. Web-based interventions seem an innovative and effective tool for delivering general information, individualized exercise recommendations, and peer support. OBJECTIVE Our first objective was to assess feasibility of our Web-based interventional concept and analyze similarities and differences in a sustained exercise implementation in different diseases. The second objective was to investigate the overall participants’ satisfaction with our Web-based concept. METHODS A total of 4 clinical trials are still being carried out, including patients with esophageal carcinoma scheduled for oncologic esophagectomy (internet-based perioperative exercise program, iPEP, study), nonalcoholic fatty liver disease (hepatic inflammation and physical performance in patients with nonalcoholic steatohepatitis, HELP, study), depression (exercise for depression, EXDEP, study), and cystic fibrosis (cystic fibrosis online mentoring for microbiome, exercise, and diet, COMMED, study). During the intervention period, the study population had access to the website with disease-specific content and a disease-specific discussion forum. All participants received weekly, individual tailored exercise recommendations from the sports therapist. The main outcome was the using behavior, which was obtained by investigating the log-in rate and duration. RESULTS A total of 20 participants (5 from each trial) were analyzed. During the intervention period, a regular contact and a consequent implementation of exercise prescription were easily achieved in all substudies. Across the 4 substudies, there was a significant decrease in log-in rates (P<.001) and log-in durations (P<.001) over time. A detailed view of the different studies shows a significant decrease in log-in rates and log-in durations in the HELP study (P=.004; P=.002) and iPEP study (P=.02; P=.001), whereas the EXDEP study (P=.58; P=.38) and COMMED study (P=.87; P=.56) showed no significant change over the 8-week intervention period. There was no significant change in physical activity within all studies (P=.31). Only in the HELP study, the physical activity level increased steadily over the period analyzed (P=.045). Overall, 17 participants (85%, 17/20) felt secure and were not scared of injury, with no major differences in the subtrials. CONCLUSIONS The universal use of the Web-based intervention appears to be applicable across the heterogonous collectives of our study patients with regard to age and disease. Although the development of physical activity shows only moderate improvements, flexible communication and tailored support could be easily integrated into patients’ daily routine. CLINICALTRIAL iPEP study: ClinicalTrials.gov NCT02478996; https://clinicaltrials.gov/ct2/show/NCT02478996 (Archived by WebCite at http://www.webcitation.org/6zL1UmHaW); HELP study: ClinicalTrials.gov NCT02526732; http://www.webcitation.org/6zJjX7d6K (Archived by WebCite at http://www.webcitation.org/6Nch4ldcL); EXDEP study: ClinicalTrials.gov NCT02874833; https://clinicaltrials.gov/ct2/show/NCT02874833 (Archived by WebCite at http://www.webcitation.org/6zJjj7FuA)

The association of innate and acquired aerobic capacity with resilience in healthy adults: Protocol for an eight-week randomized controlled web-based physical exercise intervention study (Preprint)

2021 ◽  
Author(s):  
David Tobias Ochmann ◽  
Keito F A Philippi ◽  
Peter Zeier ◽  
Magdalena Sandner ◽  
Barlo Hillen ◽  
...  
Keyword(s):  
Physical Activity ◽  
Physical Exercise ◽  
Aerobic Capacity ◽  
Exercise Intervention ◽  
Intervention Group ◽  
Control Group ◽  
Active Lifestyle ◽  
Web Based ◽  
Before And After ◽  
Physically Inactive

BACKGROUND Physical activity ameliorates chronic stress. Latest research suggests a relation between resilience and physical fitness. Beneficial adaptations of the hypothalamic-pituitary-adrenal axis, the sympathetic nervous system, the endocannabinoid system, and the tryptophan pathway, induced by an active lifestyle, are considered to be resilience conducive. However, detailed knowledge on the molecular link between the effects of acute and chronic physical exercise and an improved resilience is missing. OBJECTIVE Therefore, we implement a human exercise intervention trial addressing the main hypotheses: (1) web-based exercise training improves aerobic capacity of physically inactive adults, which (2) is accompanied by improved resilience. In this setting, we will analyze the relation of resilience parameters with innate and acquired aerobic capacity as well as circulating signaling molecules. METHODS 70 healthy physically inactive (<150min/week physical activity) adults (18-45y) will be randomly assigned to an intervention or control group. Participants in the intervention group receive weekly training utilizing progressive endurance and interval running individually adapted to their training performance via web-based physician support. A standardized incremental treadmill exercise test is performed before and after the intervention period of eight weeks to determine innate and acquired aerobic capacity. Before and after the intervention psychological tests and questionnaires that characterize parameters implicated in resilience (including impulse control, working memory, stress coping, emotion regulation) will be applied. Blood, and saliva will be sampled for analysis of lactate, cortisol, endocannabinoids, catecholamines, kynurenic acid, cell-free DNA and further circulating signal transducers. Statistical analysis will provide comprehensive knowledge on the relation of aerobic capacity and resilience, and furthermore, the capacity of peripheral factors to mediate the promoting effects of exercise on resilience. RESULTS The study was registered in October 2019. Enrollment began in September 2019. Out of 161 subjects, who were initially screened via telefon survey, 43 fulfilled the inclusion criteria and were included. Among the 17 participants in the intervention group, and 14 participants in the control group, who completed the study (total 31), no serious adverse event has been reported. Four participants withdrew during the programm (individual reasons), and 8 participants have not yet completed or begun the program due to the Covid-19 pandemic. Enrollment and data analysis are ongoing, and results are expected to be submitted for publication in October 2021. CONCLUSIONS Our study aims to demonstrate that an increase in physical activity with a simultaneous improvement in aerobic capacity is associated with an increase in resilience. This study design allows to investigate the effect of an active lifestyle on circulating molecular marker levels and their relationship to resilience factors. This will offer novel approaches for the diagnosis of depression and the therapy by exercise prescription. CLINICALTRIAL DRKS00018078, registered October 02, 2019, German Clinical Trials Register. Retrospectively registered: First participant September 10, 2019.

1143 Prevalence of Eosinophilic Esophagitis Among Patients With Cystic Fibrosis: A Web-Based Survey

2019 ◽  
Vol 114 (1) ◽  
pp. S642-S643
Author(s):  
Nizar Kherallah ◽  
Anshu Maheshwari ◽  
Jeffery Benson ◽  
Ian Kang ◽  
Sandeep Gupta
Keyword(s):  
Cystic Fibrosis ◽  
Eosinophilic Esophagitis ◽  
Web Based

scholarly journals Tablet and web-based audiometry to screen for hearing loss in adults with cystic fibrosis

Thorax ◽  
2020 ◽  
Vol 75 (8) ◽  
pp. 632-639 ◽  
Author(s):  
Anitha Vijayasingam ◽  
Emily Frost ◽  
Julie Wilkins ◽  
Lise Gillen ◽  
Presanna Premachandra ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Hearing Loss ◽  
Intraclass Correlation ◽  
Cross Sectional Study ◽  
Outpatient Setting ◽  
P Value ◽  
Cross Sectional ◽  
Web Based ◽  
High Frequency Audiometry ◽  
Increased Risk

IntroductionIndividuals with chronic lung disease (eg, cystic fibrosis (CF)) often receive antimicrobial therapy including aminoglycosides resulting in ototoxicity. Extended high-frequency audiometry has increased sensitivity for ototoxicity detection, but diagnostic audiometry in a sound-booth is costly, time-consuming and requires a trained audiologist. This cross-sectional study analysed tablet-based audiometry (Shoebox MD) performed by non-audiologists in an outpatient setting, alongside home web-based audiometry (3D Tune-In) to screen for hearing loss in adults with CF.MethodsHearing was analysed in 126 CF adults using validated questionnaires, a web self-hearing test (0.5 to 4 kHz), tablet (0.25 to 12 kHz) and sound-booth audiometry (0.25 to 12 kHz). A threshold of ≥25 dB hearing loss at ≥1 audiometric frequency was considered abnormal. Demographics and mitochondrial DNA sequencing were used to analyse risk factors, and accuracy and usability of hearing tests determined.ResultsPrevalence of hearing loss within any frequency band tested was 48%. Multivariate analysis showed age (OR 1.127; (95% CI: 1.07 to 1.18; p value<0.0001) per year older) and total intravenous antibiotic days over 10 years (OR 1.006; (95% CI: 1.002 to 1.010; p value=0.004) per further intravenous day) were significantly associated with increased risk of hearing loss. Tablet audiometry had good usability, was 93% sensitive, 88% specific with 94% negative predictive value to screen for hearing loss compared with web self-test audiometry and questionnaires which had poor sensitivity (17% and 13%, respectively). Intraclass correlation (ICC) of tablet versus sound-booth audiometry showed high correlation (ICC >0.9) at all frequencies ≥4 kHz.ConclusionsAdults with CF have a high prevalence of drug-related hearing loss and tablet-based audiometry can be a practical, accurate screening tool within integrated ototoxicity monitoring programmes for early detection.

scholarly journals Development of a self-guided web-based exercise intervention (SPIN) to treat shoulder pain in people living with spinal cord injury: protocol of a mixed methods study

BMJ Open ◽  
2019 ◽  
Vol 9 (9) ◽  
pp. e031012 ◽  
Author(s):  
Verna Stavric ◽  
Nicola Saywell ◽  
Nicola Maree Kayes
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Content Analysis ◽  
Shoulder Pain ◽  
Exercise Intervention ◽  
Intervention Development ◽  
Access To Treatment ◽  
Web Based ◽  
Cord Injury ◽  
Transport Barriers

IntroductionChronic shoulder pain is common after spinal cord injury (SCI) and limits community mobility. This leads to loss of independence and reduced quality of life. Evidence suggests that exercises can help reduce shoulder pain. However, cost, expertise and transport barriers frequently limit access to treatment services. The objective of this study is to develop an evidence-based, acceptable, usable and persuasive self-guided web-based exercise intervention to treat shoulder pain in people living with SCI.Methods and analysisAn iterative and phased person-based approach (PBA) will capture users’ perspectives on usability and acceptability to develop guiding principles that will shape the design of the intervention. The intervention will be based on key elements identified through participant input and from evidence identified through systematic and narrative reviews, to ensure the intervention addresses participants’ needs and increase the likelihood of uptake. The prototype will be iteratively refined through focus groups and think-aloud sessions. Review data will be synthesised drawing on systematic and narrative review conventions. Qualitative data will be analysed using conventional content analysis (planning phase) and directed content analysis (development phase) to inform intervention design and refinement.Ethics and disseminationEthical approval has been granted by the Auckland University of Technology Ethics Committee (AUTEC) in Auckland, New Zealand. The results of the study will be published in a peer-reviewed journal and presented at relevant national and international conferences. A summary of findings will be presented to key stakeholder groups. We will progress to a definitive trial should the findings from this intervention development study indicate the intervention is acceptable and usable.

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

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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