Category: Huntington's Disease
Objective: The benefits of exercises and physical activity in Huntington’s disease in terms of motor function, gait speed, and balance, as well as a range of physical and social benefits was identified in different studies. The purpose of this work was to improve the quality of treatment and care delivered to HD patients via organize an outpatient care of physical therapist, speech therapist and occupational therapist in Moscow.
Background: In Russia, outpatient rehabilitation is not widely available. The purpose of this work was to improve the outpatient care of a physical therapist, speech therapist and occupational therapist for HD patients in Moscow.
Method: This work presents outpatient core data for 22 patients from 8 regions of Russia with HD who applied to us during 2019-2021.The median follow-up was 1.5 months. for 3 patients our follow-up is more than year.
Results: A few patients from different regions of the country came to the center, which demonstrates the demand for this assistance. The most common complaint was gait disturbance, 10/22 noted regular falls. 14/22 patients complained of speech and swallowing changes. Based on complaints and COPM scores, the most significant needs of patients were walking, reducing the frequency of falls, communication, self-care (hygiene and change of clothes). Thus, patients required PT, OT, and a speech therapist.
Conclusion: We didn’t have a long follow up due to a number of reasons:
remoteness of the regions from Moscow, covid-19 restrictions, rehabilitation care are not covered by public insurance in Russia. The most demanded specialist was PT, which shows the underestimation of the importance and possibilities of OT and a speech therapist in HD rehabilitation in Russia..
The European Huntington Association and the Rare People Foundation (Moscow) supported the work.
To cite this abstract in AMA style:E. Lysogorskaia, T. Ivanov, M. Gukovskaya, A. Mendalieva, L. Brylev. Pilot study of outpatient rehabilitation of patients with Huntington’s disease in Russia [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/pilot-study-of-outpatient-rehabilitation-of-patients-with-huntingtons-disease-in-russia/. Accessed September 28, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/pilot-study-of-outpatient-rehabilitation-of-patients-with-huntingtons-disease-in-russia/