Effects of a remotely supervised motor rehabilitation program for individuals with Rett syndrome at home

Abstract

Purpose

In this study, the effect of a remotely supervised, home-based, family-centered individualized rehabilitation program of motor activities for individuals with Rett syndrome (RTT) was evaluated.

Materials and methods

Thirteen participants with classic genetically confirmed RTT followed by a three-month program of motor activities at home. A total of 47 rehabilitative goals were set. Goals achievement, motor function, and parental satisfaction were evaluated. Each program was carried out by the participant's parents and remotely supervised via Skype calls, twice by a therapist experienced in RTT rehabilitation.

Results

Thirty-seven (78.7%) rehabilitative goals were achieved or overachieved. Ten participants (76.9%) significantly increased their gross motor functional level with a medium size effect (0.604). Parental reports of the involved families suggest, on average, a high level of usefulness of the program (4.4/5), adherence to the program (4.4/5), and general satisfaction (4.5/5).

Conclusions

Our findings strongly support the implementation of such programs for this population. As these programs were remotely supervised, they can be implemented when the children are away from referenced facilities for long durations, such as during long holidays or a Covid-19 type lockdown.

Implications for rehabilitation

• A remote supervised motor activity program carried out by the primary caregiver supports motor functioning in RTT.

• Therapists should consider family members' motivation to carry out the activities and integrate them into the family's daily routine.

• The program should be flexible to adapt to any sudden change in medical and environmental conditions, functional ability, and family members' motivational levels.

Keywords:

• Exercise therapy
• patient-centered care
• physical therapy specialty
• Rett syndrome
• telerehabilitation

Acknowledgements

The authors would like to thank AIRett for having funded our research team and for the continuous commitment in research to improve the quality of life of individuals with Rett syndrome.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This research was funded by the Italian Rett Syndrome Association (AIRett).