IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2022i1p659-d1020052.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/1/659/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/20/1/659/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    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. 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.
    3. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Blocker, Christopher P. & Ruth, Julie A. & Sridharan, Srinivas & Beckwith, Colin & Ekici, Ahmet & Goudie-Hutton, Martina & Rosa, José Antonio & Saatcioglu, Bige & Talukdar, Debabrata & Trujillo, Carlo, 2013. "Understanding poverty and promoting poverty alleviation through transformative consumer research," Journal of Business Research, Elsevier, vol. 66(8), pages 1195-1202.
    2. Hong, Soonkwan & Vicdan, Handan, 2016. "Re-imagining the utopian: Transformation of a sustainable lifestyle in ecovillages," Journal of Business Research, Elsevier, vol. 69(1), pages 120-136.
    3. Noemi Sadowska & Dominic Laffy, 2011. "Learning uncomfortably," Border Crossing, Transnational Press London, UK, vol. 2011(1102), pages 15-28, August.
    4. Lester Darryl Geneviève & Andrea Martani & Maria Christina Mallet & Tenzin Wangmo & Bernice Simone Elger, 2019. "Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review," PLOS ONE, Public Library of Science, vol. 14(12), pages 1-44, December.
    5. Alexandra Lenis Escobar & Ramón Rueda López & Jorge E. García Guerrero & Enrique Salinas Cuadrado, 2020. "Design of Strategies for the Implementation and Management of a Complementary Monetary System Using the SWOT-AHP Methodology," Sustainability, MDPI, vol. 12(17), pages 1-23, August.
    6. Corus, Canan & Ozanne, Julie L., 2012. "Stakeholder engagement: Building participatory and deliberative spaces in subsistence markets," Journal of Business Research, Elsevier, vol. 65(12), pages 1728-1735.
    7. 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.
    8. Noemi Sadowska & Dominic Laffy, 2011. "Learning uncomfortably," Border Crossing, Transnational Press London, UK, vol. 1(2), pages 15-28, July-Dece.
    9. Michael Rose & Katharina Schleicher & Katrin Maibaum, 2017. "Transforming Well-Being in Wuppertal—Conditions and Constraints," Sustainability, MDPI, vol. 9(12), pages 1-27, December.
    10. Dee Warmath & Genevieve Elizabeth O'Connor & Nancy Wong & Casey Newmeyer, 2022. "The role of social psychological factors in vulnerability to financial hardship," Journal of Consumer Affairs, Wiley Blackwell, vol. 56(3), pages 1148-1177, September.
    11. Zwartkruis, Joyce V. & Berg, Holger & Hof, Andries F. & Kok, Marcel T.J., 2020. "Agricultural nature conservation in the Netherlands: Three lenses on transition pathways," Technological Forecasting and Social Change, Elsevier, vol. 151(C).
    12. Srinivas Venugopal, 2021. "Envisioning a community‐centric approach to impact assessments in subsistence marketplaces," Journal of Consumer Affairs, Wiley Blackwell, vol. 55(1), pages 118-133, March.
    13. Linda L. Price & Russell W. Belk, 2016. "Consumer Ownership and Sharing: Introduction to the Issue," Journal of the Association for Consumer Research, University of Chicago Press, vol. 1(2), pages 193-197.
    14. Wided Batat & John F. Tanner, 2021. "Unveiling (In)Vulnerability in an Adolescent’s Consumption Subculture: A Framework to Understand Adolescents’ Experienced (In)Vulnerability and Ethical Implications," Journal of Business Ethics, Springer, vol. 169(4), pages 713-730, April.
    15. Stephen G. Saunders & Srinivas Sridharan & Dani J. Barrington & Regina Souter & Katherine F. Shields & Semisi Meo & Jamie K. Bartram, 2021. "Consumer marketplaces and self‐sufficiency: Meeting consumption needs in community," Journal of Consumer Affairs, Wiley Blackwell, vol. 55(4), pages 1691-1711, December.
    16. Ariana Kong & Michelle Dickson & Lucie Ramjan & Mariana S. Sousa & Nathan Jones & Ravi Srinivas & Jemma Chao & Joanne Goulding & Ajesh George, 2021. "Aboriginal Health Workers Promoting Oral Health among Aboriginal and Torres Strait Islander Women during Pregnancy: Development and Pilot Testing of the Grinnin’ Up Mums & Bubs Program," IJERPH, MDPI, vol. 18(18), pages 1-21, September.
    17. Barrington, D.J. & Sridharan, S. & Saunders, S.G. & Souter, R.T. & Bartram, J. & Shields, K.F. & Meo, S. & Kearton, A. & Hughes, R.K., 2016. "Improving community health through marketing exchanges: A participatory action research study on water, sanitation, and hygiene in three Melanesian countries," Social Science & Medicine, Elsevier, vol. 171(C), pages 84-93.
    18. Crockett, David & Downey, Hilary & Fırat, A. Fuat & Ozanne, Julie L. & Pettigrew, Simone, 2013. "Conceptualizing a transformative research agenda," Journal of Business Research, Elsevier, vol. 66(8), pages 1171-1178.
    19. DeBerry-Spence, Benét, 2010. "Making theory and practice in subsistence markets: An analytic autoethnography of MASAZI in Accra, Ghana," Journal of Business Research, Elsevier, vol. 63(6), pages 608-616, June.
    20. Joseph L. Scarpaci & Benjamin K. Sovacool & Ronnie Ballantyne, 2016. "A Critical Review of the Costs of Advertising: a Transformative Consumer Research Perspective," Journal of Consumer Policy, Springer, vol. 39(2), pages 119-140, June.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2022:i:1:p:659-:d:1020052. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.