Exercise Clinical Trial
Official title:
Feasibility of a Blended Therapy Approach: Face-to-face Physiotherapy Sessions Combined With an Interactive Tablet-based Exercise Program for People With Rare Diseases.
Exercise is an important part of therapy guidelines in the rehabilitation of rare diseases (RDs) as Haemophilia and Myositis. The aim of this study is not to evaluate a new therapy intervention, but to evaluate the delivery of this intervention. In clinical practice, patients are usually instructed to perform an exercise program at home. Normally, a physiotherapist (PT) provides an instruction (paper-) sheet. In this study, the investigators evaluate the feasibility of an interactive tablet-based way of delivery. The exercise program is - as usual in physiotherapy - individually tailored by the PT.
Myositis and haemophilia belong with a prevalence rate of 0.4-17.3 of 100`000 and 2-12 of
100`000, respectively to the group of RDs. The fact that a RD affects only a small number of
people, indicates that rehabilitation knowledge outside the specialised medical centers is
rare. Thus, since many people with RD do not live nearby these institutions, they do not have
direct acces to rehabilitation programmes. The University Hospital Zurich (USZ) offers
medical treatment and Rehabilitation Support in such reference centers, among others for
people with myositis (PWM) and for people with haemophilia (PWH).
Although these two diseases differ strongly in their underlying cause, affected persons are
confronted with similar problems: PWM and PWH suffer from musculoskeletal problems and
therefore, a physically active lifestyle is essential to maintain good health. Nevertheless,
PWM and PWH were previously discouraged from participating in physical exercise.
Consequently, both groups are less physically active, have a lower fitness level and a higher
risk for comorbidities, compared to healthy people. Nowadays, the beneficial effects of
exercise in PWH and in PWM are well accepted and there is evidence that PWH and PWM profit
from physical exercise programs.
Despite the encouraging benefits of physical exercise in PWH and PWM, these may be challenged
with more barriers to start and maintain an exercise program, compared to healthy persons,
e.g. due to reduced accessibility of specialised physiotherapists.
Telerehabilitation (TR), a subfield of telemedicine, may help to overcome some of the
barriers to exercise regularly and connect PWH/PWM with specialised physiotherapists. TR is
defined as the provision of rehabilitation services from a distance using telecommunication
technologies as the delivery medium. This approach may optimize the timing, intensity and
sequencing of interventions and provide opportunities for individuals to receive
rehabilitation in their own social and professional environments from disease-specialised
caregivers. An additional advantage of TR is the possibility to implement different
persuasive technologies such as personalisation, self-monitoring, tailoring, goal setting,
comparison and conditioning through positive and negative reinforcement in the development of
exercise programmes. These technologies help to make exercise programmes more enjoyable and,
therefore, enhance patients' motivation to exercise regularly.
Furthermore, the importance of individual and social support has been emphasized in several
reviews evaluating health behaviour change for example becoming more active. This kind of
support can be integrated in the design of a TR program and it can further be enhanced by
blending TR with face-to-face sessions. The so-called blended therapy is a promising approach
combining the advantages from traditional rehabilitation and new technologies.
The aim of this study is to evaluate feasibility of a blended therapy approach, combining a
tablet-based exercise program, called "Dividat Fit" with face-to-face therapy sessions for
PWH and PWM.
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