Научно-практический рецензируемый журнал
"Современные проблемы здравоохранения
и медицинской статистики"
Scientific journal «Current problems of health care and medical statistics»
Новости научно-практического рецензируемого журнала
Больше новостей

Диагностика и профилактика преждевременного старения

Организация здравоохранения

REGULATORY PROBLEMS OF THE REHABILITATION ORGANIZATION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY 5q IN RUSSIA

A.J. Gayduk1,2, A.V. Gazheva2, O.V. Pesneva3, E.F. Makhanova4, Ya.V. Vlasov1,3
1. Federal State Budgetary Educational Institution of Higher Education «Samara State Medical University» of the Ministry of Healthcare of the Russian Federation, Samara
2. State budgetary institution «Research Institute for Healthcare Organization and Medical Management of Moscow Healthcare Department», Moscow
3. Autonomous non-profit Organization «Russian Patients Association», Moscow
4. State Healthcare Institution "City Polyclinic No. 1" named after S. M. Kirova, Ulyanovsk
Full file PDF (379 Kb)
Summary:
Spinal muscular atrophy (SMA) is a rare genetic disease that in most cases occurs in childhood and, if left untreated, leads to disability and death before adulthood. Over the past two years, the leadership of the Russian Federation has taken important steps to improve the quality of medical care for patients with SMA 5q. One of the bases for the correction of functional disorders in patients with SMA and their formation in the role of a functional member of society is the implementation of a complex of rehabilitation measures, including medical rehabilitation. The aim of the study is to analyze the legal framework governing the organization and conduct of medical rehabilitation for the completeness of the data necessary for the organization and conduct of medical rehabilitation of patients with SMA 5q of proper quality. Materials and methods. To collect material, we carried out a search using the eLibrary, CyberLeninka, PubMed databases, the Garant information system, the website of the Ministry of Health of the Russian Federation, as well as the web library of the Samara State Medical University of the Ministry of Health of Russia and the Research Institute of Research Institute for Healthcare Organization and Medical Management of Moscow Healthcare Department. Results and discussion. Paragraphs 14 and 15 of the Order of the Ministry of Health of the Russian Federation N 878n dated October 23, 2019 suggest that the Clinical Guidelines for the management of children with SMA 5q should contain information on the rehabilitation routing of children with SMA 5q, as well as on the interpretation of the results assessing the motor functions of patients in the context of determining the rehabilitation status and potential, including in dynamics. This document does not contain the listed information. At the moment, there are no accepted Clinical Guidelines for the management of adult patients with SMA 5q, on the basis of which medical rehabilitation of adult patients with SMA should be carried out, in accordance with paragraph 6 of the Order of the Ministry of Health of the Russian Federation dated July 31, 2020 No. 788n. Routing of adult patients is determined according to Rehabilitation Routing Scale (RRS) only, which does not take into account the characteristics of adult patients with SMA. The regulations mentioned above do not take into account the specifics of motor disorders and do not recommend the use of motor skills assessment scales in determining the rehabilitation status, diagnosis and prognosis of patients with SMA. Conclusions. The current state of the legal framework governing the organization and conduct of medical rehabilitation activities for patients with SMA 5q in Russia is not optimal and does not allow organizing and conducting rehabilitation activities of adequate quality. Improvement of the Clinical Guidelines for the management of children with SMA 5q is required. Organization and implementation of measures for medical rehabilitation of adult patients with SMA in Russia requires the development of appropriate clinical guidelines. Order of the Ministry of Health of the Russian Federation of July 31, 2020 No. 788n should be changed. There is a need for validation of scales for assessing motor skills in Russia.
Keywords healthcare organization, clinical guidelines, hereditary neuromuscular diseases, rehabilitation, spinal muscular atrophy

Bibliographic reference:
A.J. Gayduk, A.V. Gazheva, O.V. Pesneva, E.F. Makhanova, Ya.V. Vlasov, REGULATORY PROBLEMS OF THE REHABILITATION ORGANIZATION FOR PATIENTS WITH SPINAL MUSCULAR ATROPHY 5Q IN RUSSIA // Scientific journal «Current problems of health care and medical statistics». - 2023. - №3;
URL: http://healthproblem.ru/magazines?textEn=1112 (date of access: 15.05.2024).

Code to embed on your website or blog:

Article views:
Today 2 | Week 2 | Total: 110