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Individualized Remotely Supervised Motor Activity Programs Promote Rehabilitation Goal Achievement, Motor Functioning, and Physical Activity of People with Rett Syndrome—A Single-Cohort Study

Author

Listed:
  • Alberto Romano

    (Department of Health System Management, Ariel University, Ariel 4070000, Israel
    Airett Innovation and Research Center, 37122 Verona, Italy)

  • Elena Ippolito

    (SMART Learning Center, 20133 Milan, Italy)

  • Martina Favetta

    (Movement Analysis and Robotics Laboratory, Intensive Neurorehabilitation and Robotics Department, Bambino Gesù Children’s Hospital, 00165 Rome, Italy)

  • Meir Lotan

    (Department of Physiotherapy, Ariel University, Ariel 4070000, Israel
    Israeli Rett Syndrome National Evaluation Team, Ramat Gan 5200100, Israel
    These authors contributed equally to this work.)

  • Daniel Sender Moran

    (Department of Health System Management, Ariel University, Ariel 4070000, Israel
    These authors contributed equally to this work.)

Abstract

Background: Gross motor function in Rett syndrome (RTT) is always limited. The complex clinical picture typical of most people with RTT requires intensive and specific rehabilitation programs. Previous reports on remotely supervised motor activity programs suggested positive outcomes for this population. The current article describes the impact of a remote-supervised motor activity program carried out by family members of individuals with RTT on achieving rehabilitation goals and improving gross and fine motor functioning and daily physical activity. Methods: Forty subjects with RTT followed a three-month remotely supervised motor activity program carried out by their family members at home after a three-month baseline period. After the end of the intervention, a three-month wash-out period was implemented. Rehabilitation goal achievement, motor functioning, and level of daily physical activity were measured. Results: 82.4% of rehabilitation goals were achieved or overachieved. Participants’ motor functioning and physical activity significantly increased after the intervention ( p ˂ 0.001). Improvements were maintained after the wash-out phase. Conclusions: The proposed intervention was effective for people with RTT of various ages and severity levels. The results highlight the need for lifelong, individualized, daily based, and professionally supervised rehabilitation possibilities for individuals with RTT.

Suggested Citation

  • Alberto Romano & Elena Ippolito & Martina Favetta & Meir Lotan & Daniel Sender Moran, 2022. "Individualized Remotely Supervised Motor Activity Programs Promote Rehabilitation Goal Achievement, Motor Functioning, and Physical Activity of People with Rett Syndrome—A Single-Cohort Study," IJERPH, MDPI, vol. 20(1), pages 1-15, December.
    • Handle: RePEc:gam:jijerp:v:20:y:2022:i:1:p:659-:d:1020052
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    References listed on IDEAS

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    1. Rosa Angela Fabio & Martina Semino & Samantha Giannatiempo & Tindara Caprì & Giancarlo Iannizzotto & Andrea Nucita, 2022. "Comparing Advanced with Basic Telerehabilitation Technologies for Patients with Rett Syndrome—A Pilot Study on Behavioral Parameters," IJERPH, MDPI, vol. 19(1), pages 1-16, January.
    2. Julie L. Ozanne & Bige Saatcioglu, 2008. "Participatory Action Research," Journal of Consumer Research, Journal of Consumer Research Inc., vol. 35(3), pages 423-439, March.
    3. Jenny Downs & Michelle Stahlhut & Kingsley Wong & Birgit Syhler & Anne-Marie Bisgaard & Peter Jacoby & Helen Leonard, 2016. "Validating the Rett Syndrome Gross Motor Scale," PLOS ONE, Public Library of Science, vol. 11(1), pages 1-11, January.
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