E-health based coaching of physical training in patients with sarcoidosis or pulmonary fibrosis
Pulmonary fibrosis is a devastating disease that afflicts patients with relentlessly progressive shortness of breath. Sarcoidosis is a systemic disease commonly affecting the lungs, but often involving other organs. The evolution (progression, improvement, or stability), symptomatology and impact of sarcoidosis are variable. This depends on organ involvement, phenotype, and the intensity of inflammation. Across this variability, fatigue is an exceptionally and most frustrating symptom of sarcoidosis. Fatigue, dyspnea, reduced exercise tolerance, peripheral and respiratory muscle dysfunction impact greatly on quality of life (QOL) in sarcoidosis patients. Structured exercise training has the potential to improve (functional) exercise capacity, muscle strength, and reduce fatigue.
As the importance of physical activity is recognized in many chronic diseases and in health promotion, the task of the development of physical training programs becomes more and more important in research and practice challenges. The measurement of physical activity (PA), and of the factors influencing it, is an important part of interstitial lung disease (ILD). care promoting efforts to address physical inactivity. Thus, efforts to increase PA also in pulmonary fibrosis and sarcoidosis merit priority attention in its management and follow-up. Few studies have addressed this issue in ILD. A growing body of evidence with respect to short-term effects of exercise training has demonstrated clinical benefits in ILD, including sarcoidosis and pulmonary fibrosis. However, aspects of training programs, maintenance and predictors of improvement and the impact on prognosis need to be further explored. More randomized controlled trials are needed for the establishment of exercise training within pulmonary rehabilitation as a standard of care for pulmonary fibrosis and sarcoidosis. Moreover, the current running rehabilitation programs in respiratory diseases mostly focus on patients with chronic obstructive pulmonary diseases (COPD). For patients with severe burden of disease due to advanced pulmonary fibrosis or sarcoidosis, home based physical training could be very beneficial. This could avoid them to have to travel and spares costs.
The aim of this study is to evaluate the benefit of home-based physical training, supervised by physical therapists on line and/or by phone calls, in patients with pulmonary fibrosis or sarcoidosis in terms of reduction of burden of disease (muscle strength, exercise capacity, fatigue, mental status and QOL).
During a 12 months’ period 50 pulmonary fibrosis patients ((IPF (Idiopathic Pulmonary Fibrosis), NSIP (Non Specific Interstitial Pneumonia) or chronic EAA (Extrinsic Allergic Alveolitis)) and 100 sarcoidosis patients of the out-patient clinic of the ILD Center of Excellence, St. Antonius Hospital, location Nieuwegein, NL will be included. All relevant demographic and medical data will be gathered from the medical records.
All participants will be tested at baseline and after 3 months in a standardized regular check-up at the department of physical therapy of the participating hospitals. The included patients will get the advice to exercise and will carry an activity monitor to measure their daily activities during this period. Moreover, an ild care activity monitor-app will be installed on their mobile phones.
Patients will be randomized in 2 groups. Group I will be coached in a home based supervised physical training (SPT) program and Group II will get no further supervision. Patients of group I will be monitored once a week, using e-health: phone calls, emails and skype, if appropriate.
After 6 months again a final evaluation will be done by completing some questionnaires. Participants will be asked about their situation and activity level 6 months after inclusion.
Exercise capacity, muscle function, fatigue and QOL will be assessed in both groups and analyzed at baseline and after 3 and 6 months, using 6-minute walking distance; Steep Ramp Test (SRT: cycle ergometer endurance test); 2 minutes steps counted, performed on a stepping device. Lung function tests: Forced vital capacity (FVC) and forced expiratory volume in one second (FEV1) and the diffusing capacity of the lung for carbon monoxide (DLCO) at baseline and after the 3 months training period will be obtained from the regular check-up.
BORG, Fatigue Assessment Scale (FAS); Hospital Anxiety Depression Scale (HADS); shortened WHO Quality of Life Questionnaire (WHOQOL-bref); Cognitive Failure Questionnaire (CFQ), King’s Sarcoidosis Questionnaire (only sarcoidosis patients).
All examinations will be carried out as part of the usual management of patients with pulmonary fibrosis or sarcoidosis. For the intervention program supervisors (physical therapists with knowledge of pulmonary fibrosis and sarcoidosis) will be drawn from the Department of Physical Therapy of Hospital Gelderse Vallei, Ede and the ild care foundation.
Type of study
This is a prospective randomized trial. The study has been submitted to the Medical Ethics Committee of Hospital Gelderse Vallei and is approved and considered to be a not WMO liable study. All measurements and interventions are considered as part of the regular care for ILD patients.
Clinical data will be gathered from the medical records.
Results of this study
The results will be used to stimulate broader initiatives to promote supervised physical training in ILD and help develop (inter)national guidelines.
Prof. M. Drent, professor ILD, Dept. of Pharmacology and Toxicology, FHML, University Maastricht and pulmonologist ILD Center of Excellence, St. Antonius Hospital, location Nieuwegein, NL
Prof. J. De Vries, Professor of Quality of life in the medical setting Department of Medical Psychology, Elisabeth TweeSteden Ziekenhuis Tilburg, Department of Medical and Clinical Psychology, CoRPS, Tilburg University, Tilburg, NL
Marjon Elfferich, ild care foundation research team, Ede, NL; Roger Wouterse, Productmanager, Sysqa BV, IT Consultancy, Almere, NL; Robert Huisintveld, projectmanager, Mansystems Nederland BV, Barneveld, NL; Ton Knevel, head of department of Physical Therapy, Hospital Gelderse Vallei, Ede, NL
August 2016 – January 2018
Due to the character of this study and according to the criteria as mentioned above, approval by a Medical Ethics Committee was not required. Research with human subjects falls under The Medical Research Involving Human Subjects Act (WMO) in the Netherlands. Studies involving human subjects must undergo a medical ethics review if they are subject to the Medical Research Involving Human Subjects Act (WMO).
Link: ild care app verbetert de kwaliteit van leven van longpatiënten, door Michelle Scherpenborg
Link: Betere monitoring van longziekten door ontwikkeling van ild care bewegingsmonitor app, door Roger Wouterse, SYSQA BV
Link: Drent M. Zorg op maat dankzij unieke multidisciplinaire samenwerking. Ontwikkeling ild care bewegingsmonitor-app (innovatie). Loupe 2016; 11(4): 6
Interested in sponsorship opportunities of this project?
We are still looking for sponsorship of this project. There are project-specific donations at several predefined funding levels. If you are interested and would like to be informed about possibilities, conditions, options as well as the benefits, please contact: Marjon Elfferich, research manager ild care foundation: e-mail: firstname.lastname@example.org.
Bert Strookappe MSc, physical therapist, Gelderse Vallei hospital, Ede, the Netherlands (NL) and memeber research team ild care foundation and ILD Center of Excellence, St. Antonius Hospital, location Nieuwegein, NL.
Bert Strookappe was born on November 13, 1981, in Deventer, The Netherlands. After training to become a physical therapist he worked in three consecutive hospitals. In the same year (2005) he started the Master’s degree program in physical therapy at the University of Utrecht. Since December 2007 he has been working at the Department of Physical Therapy of Gelderse Vallei Hospital, as a physical therapist, focusing on the treatment of patient in the surgical ward (vascular surgery) and Intensive Care. Clinical rehabilitation of critically ill patients (with a wide range of conditions and comorbidities) has been his main interest. He considers the management of the rehabilitation process of critically ill patients, from ‘bedridden’ to ‘walking out of the hospital’, to be the most inspiring aspect of his work. The integration of scientific evidence in daily patient care is an important part of his tasks. Since 2012 he has been involved in the management of outpatients with interstitial lung disease (ild). The research project described in this thesis started in 2014 at Gelderse Vallei Hospital, with Prof. Marjolein Drent and Prof. Jolanda De Vries as his supervisors. He is a member of the ild care foundation research team and the ILD Center of Excellence of the St. Antonius Hospital, location Nieuwegein, The Netherlands. The results of the studies so far have been presented at the annual European Respiratory Society’s (ERS) 2015 International Annual Congress in Amsterdam, as well as at the American Association of Sarcoidosis and Other Granulomatous Disorders’ (AASOG) 2015 conference in Denver, USA, and at the Foundation for Sarcoidosis Research’s (FSR) Patients 2015 Conference in New Orleans, USA. He was an invited speaker at the WASOG (World Association of Sarcoidosis and Other Granulomatous Disorders) meeting in Gdansk, Poland, June 2016. In 2015 he received the ‘Research Support 2016’ grant from the Sarcoïdose Belangenvereniging Nederland (SBN: Dutch Sarcoidosis Patients Association) to support the research-project entitled ‘Physical Training in Sarcoidosis’. He lives with his wife, Flora Strookappe-Kokenberg, and two sons, Julian and Benjamin in Huissen, The Netherlands.
Strookappe B, Elfferich M, Swigris J, Verschoof A, Verschakelen J, Knevel T, Drent M. Benefits of physical training in patients with idiopathic or end-stage sarcoidosis-related pulmonary fibrosis: a pilot study. Sarcoidosis Vasc Diffuse Lung Dis 2015; 22; 32(1): 43-52.
Strookappe B, Elfferich M, Drent M. Fysieke training bij patiënten met longfibrose en ernstige longsarcoïdose. Longkruid 2015 (april); 242,
Strookappe B, Swigris J, De Vries J, Elfferich M, Knevel T, Drent M. Benefits of physical training in sarcoidosis. Lung 2015; 193; 701-708.
Drent M, Strookappe B, Hoitsma E, De Vries J. Consequences of sarcoidosis. Clin Chest Med 2015; 36(4): 727-37.
van Manen M, Wapenaar M, Strookappe B, Drent M, et al. Validation of the King’s Sarcoidosis Questionnaire (KSQ) in a Dutch sarcoidosis population. Sarcoidosis Vasc Diffuse Lung Dis 2016; 33; 75-82.
Strookappe B, De Vries J, Elfferich M, Kuijpers P, Knevel T, Drent M. Predictors of fatigue in sarcoidosis: the value of exercise testing. Respir Med 2016; 116: 49–54.
Strookappe B, Saketkoo LA, Elfferich M, Holland A, De Vries J, Knevel T, Drent M.
Physical activity and training in sarcoidosis: review and practical experienced based recommendations.
Exp Rev Respir Med 2016; 10 (10): 1057-1068.
Strookappe B, Swigris J, De Vries J, Elfferich M, Knevel T, Drent M. Benefits of physical training in patients with sarcoidosis. Eur Respir J 46(suppl 59): PA831.
Strookappe B, Saketkoo LA, Elfferich M, De Vries J, Drent M. Practical experience-based recommendations for physical therapy in sarcoidosis. Oral presentation and poster AASOG Denver 2015 September 25-26.
Strookappe B, Benefits of physical training in Patients with sarcoidosis. Oral presentation First Tulane Sarcoidosis Multi-Specialty Clinical Conference Sarcoidosis: “Tackling the Trickster” Saturday, February 27, 2016