Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jan 10, 2021
Date Accepted: May 6, 2021
The use of telerehabilitation to deliver a home exercise program to youths with arthrogryposis: A pilot study
ABSTRACT
Background:
Arthrogryposis multiplex congenita (AMC) is characterized by joint contractures and muscle weakness limiting daily activities. Youths with AMC require frequent physical therapeutic follow-ups to limit recurrence of contractures and maintain range of motion (ROM) and muscle strength, but access to specialized care may be limited due to geographical distance. Telerehabilitation can offer a potential solution to deliver frequent follow-ups for youths with AMC but research on the use of telerehabilitation in children with musculoskeletal disorders is scarce.
Objective:
To evaluate the feasibility of delivering a Home Exercise Program (HEP) using telerehabilitation for youths with AMC. The effectiveness of the HEP was explored as a secondary aim.
Methods:
Youths between the age of 8 and 21 years with AMC were recruited at Shriners Hospital for Children-Canada. Participants completed baseline and post-HEP physical activity (PAQ-A), functional (PODCI) and pain (APPT) questionnaires and clinicians assessed their active ROM with a virtual goniometer. Clinicians used the Goal Attainment Scale (GAS) with the participants to identify individualized goals to develop a 12-week HEP and assessed achievement of those goals. Follow-ups every three weeks were provided to adjust the HEP. Withdrawal rates, compliance to the HEP and to the follow-ups were collected to assess the feasibility of this approach. Inter-rater reliability of using a virtual goniometer was assessed with intraclass correlation coefficient (ICC) and associated 95% CI. Nonparametric tests (Wilcoxon signed rank) were used to evaluate the feasibility and explore the effectiveness of the HEP.
Results:
Of the 11 youths that were recruited, seven youths (median=16.9 years) completed the HEP. Among 47 appointments scheduled, five had to be rescheduled in less than 24 hours. Participants performed their HEP 2.04x/week (95% CI: 1.25 to 4.08x/week), and reported good satisfaction towards the approach. A general ICC of 0.985 (95% CI: 0.980; 0.989) was found for virtual ROM measurement. Twelve of the fifteen goals set with participants were achieved. Statistically significant improvements were observed in the pain domain of the PODCI (pre: 71, range: 34–100; post: 85, range: 49–100; P=.08) and PAQ-A (pre: 1.62, range: 1.00-2.82; post: 2.32, range: 1.00-3.45; P=.046).
Conclusions:
Remote delivery of a HEP for youths with AMC was feasible. Promising results were found for the effectiveness of the HEP for youths with AMC to achieve their goals. However, this exercise intervention should be assessed with a larger sample size in a randomized control trial. Clinical Trial: International Registered Report Identifier (IRRID): DERR2-10.2196/18688
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