JMIR Publications

ABSTRACT

Background:

Arthrogryposis multiplex congenita (AMC) is a rare disorder characterised by joint contractures present in at least two body areas. In addition to these contractures, individuals with AMC can have decreased muscle mass, leading to limitations in daily life activity. Exercises have the potential to maintain or improve the range of motion and muscle strength. However, this type of intervention necessitates frequent follow-ups that are currently difficult to provide with youth with AMC because they often live far from the specialised hospital. To overcome this distance challenge, telecommunication technologies can be used to deliver rehabilitation from a remote, which is called telerehabilitation. The protocol will be presented in this manuscript.

Objective:

This pilot study aims to: 1) Evaluate the feasibility of using telerehabilitation to provide a home exercise program for youth with AMC, and 2) Assess the effectiveness of a home exercise program.

Methods:

Ten youth aged 8 to 21 years old with AMC will be recruited. The intervention consists in a 12 weeks individualised home-based exercises intervention delivered remotely using telerehabilitation. At baseline, participants will complete the Physical Activity Questionnaire (PAQ-A) and the Pediatrics Outcomes Data Collection Instrument (PODCI) to assess pain, functions and level of physical activity. During the first telerehabilitation meeting, the rehabilitation therapists will measure the range of motion using a virtual goniometer and assess the functional level. With the participants, they will use the Goal Attainment Scale (GAS) to set individualised objectives and develop the individualised intervention. Follow-ups will occur every 3 weeks to make sure exercises are performed safely and to progress the exercises when needed. At the end of the 12-week intervention, rehabilitation therapists will re-evaluate the participant using the same outcome measures as the initial evaluation. Youth will be asked to complete the same questionnaires, with the addition of questions about their satisfaction regarding the intervention. Non-parametric and descriptive statistics will be used to evaluate the feasibility and effectiveness.

Results:

Ethics approval has been obtained in October 2018. Recruitment and data collection started in January 2019 and is expected to be completed by May 2020.

Conclusions:

This pilot study will help us learn how a large-scale project may work in practice to improve joint mobility and reduce pain in youth with AMC, thus informing a future clinical trial.