A Pilot Study Delivering Physiotherapy Support for Rett Syndrome Using a Telehealth Framework Suitable for COVID-19 Lockdown

ABSTRACT

Background: Rett syndrome (RTT) is a genetically caused neurodevelopmental disorder associated with severe disability. We assessed the feasibility of a telehealth program supporting gross motor skills in RTT.

Methods: Five girls with RTT were assessed and a home-based exercise program developed in response to functional goals. Families then participated in monthly Skype sessions for 6 months, guided by a physiotherapist to monitor progress and adjust the program as necessary. Goal Attainment Scaling was used to evaluate progress and a parental satisfaction questionnaire was administered.

Results: Four goals were established for each participant and progress was greater than would be expected in 16 of 20 goals. Parents evaluated the program as feasible and useful for their daughters.

Discussion: A telehealth model of home-based intervention supported individuals with RTT to achieve gross motor skills and was found to be feasible. This model is important at present times during COVID-19 outbreak and lockdown.

KEYWORDS:

• Rett syndrome
• telehealth
• remote rehabilitation
• COVID-19

Acknowledgments

The authors thank the Rettsyndrome Ireland, the participating children and their parents for enabling this project, for performing and adhering to the program

Conflicts of Interest/Competing Interests

The authors have no competing interests to declare.

Availability of Data and Material

All data and materials presented in this article will be available online.

Ethics Approval

This research has been conducted after receiving ethical approval by the IRB of Haifa University. Approval No. 234/14. The present work has been carried out in accordance with The Code of Ethics of the World Medical Association (Declaration of Helsinki) for experiments involving humans.

Consent to participate: Informed consent was obtained for experimentation with human subjects (in the present project by legal guardians of all participants). The privacy rights of human subjects have been observed.

Consent for Publication

The publication of this work is approved by all authors, and if this article is accepted, it will not be published elsewhere in any form without the written consent of the copyright holder.

Additional information

Funding

No financial support was received for the implementation of the present research.