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UDC 616.832-004.2:616-036.865
ANALYSIS OF THE STRUCTURE AND DYNAMICS OF DISABILITY OF PATIENTS WITH MULTIPLE SCLEROSIS IN THE CITY OF UFA
Bashkir State Medical University, Ufa Ye.V. Ivanova, K.Z. Bachtiyarova
A retrospective analysis of the structure and dynamics of disability due to multiple sclerosis in the city of Ufa in the period of 2010-2016 showed that permanent disability is present in 256 (48,5%) patients, 72% of whom are of working age. The majority of persons with disabilities (57%) are characterized by the secondary-progressive course of the disease. There is observed the decrease in the number of persons declared as disabled for the first time, that is most likely connected with the improvement of diagnostics, the advent of multiple sclerosis disease modifying drugs and early start of treatment. Key words: multiple sclerosis, permanent disability, disability.
Early disability of the working-age population leaves multiple sclerosis (MS) one of the leaders of socially significant diseases, while the main direction of government support is still the pharmaceutical support. Since 2007, in the Russian Federation there has been functioning the program "Seven Costly Nosologies", which provides the patients with drugs changing the course of MS. In many regions there are opened centers or advanced rooms, where, as a rule, work only neurologists conducting diagnostics, supervision of MS patients and selection of immunomodulatory therapy. Nevertheless, in about 10 years since the disease onset about 50% of patients with MS become disabled [1]. By the correct occupational guidance and sustainable job placement and the possibility of rehabilitation in the specialized centers, the majority of working disabled persons could continue labor activity [2]. Due to the absence of existing statistical reporting on the disability (7 social security form) as a separate unit of multiple sclerosis, the exact number of disabled persons due to MS in the Russian Federation is not known. However, exactly the information on the number and structure of MS disability can help the government to pass legal acts for the development of the rehabilitation system and other measures of social support for MS patients and their families.
Objective: to carry out the analysis of the structure and dynamics of disability of patients with MS in the large industrial city of Ufa - the capital of the Republic of Bashkortostan in the period of 2010-2016.
Materials and methods
There was performed the analysis of the information on MS patients for the period of 20102016 using the data of the register of patients of the Republican Center of Multiple Sclerosis (RCMS) on the basis of the G.G. Kuvatov Republican clinical hospital (Ufa), examination certificates of disable persons of the Federal State Institution
Central bureau of medical and social assessment in the Republic of Bashkortostan.
For all patients there were filled the questionnaires elaborated by the international working group on studying the epidemiology of MS of the Norwegian Academy of Science and Letters translated and amended by the department of neurology and neurosurgery of RSMU (Gusev Ye.I., Boiko A.N., 1997), which were additionally supplemented by medical and social questions. The obtained results were compared by means of calculating mean values and the error of mean (M ± m). The assessment of intergroup differences by qualitative parameters was performed by means of Pearson's chi-squared test (x2) with Yates' correction for continuity using the contingency tables 2x2. The statistical analysis was carried on a personal computer using Statistica 10.0 programs (StatSoft, USA). The critical level of significance by testing of statistical hypothesis in the current research was taken equal to 0,05.
Results and discussion
Totally, in the city of Ufa there reside 527 patients with multiple sclerosis. The prevalence of MS in Ufa as of 1.01.2017 constituted 47,4 per 100 000 population, which allows to refer the region to the zone of the average risk [3]. 256 (48,5%) persons are considered disabled, three of whom are disabled due to other pathology (oncology and diabetes mellitus), 253 - due to multiple sclerosis, upon that, 183 persons (72,3%) are of the working age. The average age of patients with disability -47,3±11,6 (from 15 to 70 years), men - 45,8±11,4 (from 22 to 67 years), women - 48±11,6 (from 15 to 70 years).
The average age of the occurrence of first disease symptoms in the disable persons constitutes 30±10,4, among men - 30,6±9,8,in women - 29,7±10,6. The earliest occurrence is registered at the age of 5 years in women, the latest - at the age of 58 years in men. The average disease duration in disabled persons with multiple sclerosis consti-
tutes 17,1±9,74 years (in men - 15,1±9, in women -18,1±9,9). The mean EDSS score in the total cohort of the disabled - 5,3±1 (in men - 5,5±1,3 , in women - 5,1±1,3).
During the study period the "Classification and criteria for the medical-social expertise of persons" has been changed for three times, which has led to a considerable reduction of the number of persons firstly considered disabled - from 25 people in 2010 to 15 people in 2016, and in 2016 by the regular survey 2 people were not considered disabled.
We have conducted the comparative analysis of the structure of permanent disability among the persons considered disabled before and after 2010.
In the structure of primary disability, both before 2010 and after prevail the disabled persons of group 3 (84% - in 2010, 60% - in 2016) (Figure 1). However, the share of group 2 in 2016 is higher than in 2010 (33% against 12%). In 2005 in the Republic of Bashkortostan there was carried the epidemiological research, which showed, that the amount of disabled persons with groups 1 and 2 among the patients with MS constitutes 51% [4]. The growth of share of persons with severe disability is probably connected with the imperfection of disability criteria implied nowadays.
In the "Classification and criteria for the medical-social expertise of persons" approved by the decree of the Ministry of labor and social protection of population No. 1024 of 17 December 2015 the preference is given to the degree of paresis intensity
by the examination of patients with multiple sclerosis. Other symptoms of the disease including those, which are not considered focal and are not considered in the EDSS scale (fatigue, pain syndrome, sleep disturbance, sexual dysfunction, emotionally affective disorders), are not taken into account, consequently, the MS patients are not considered disabled by the examination during a long-term period. Moreover, due the program "Seven Costly Nosologies", patients with MS receive MSD-MD (multiple sclerosis disease modifying drugs) in full and, in case of working ability, do not apply for disability benefits. Thus, they are forwarded to the Bureau of Medical and Social Assessment with already existing expressed neurologic impairment, and, consequently, are traced to the groups of more severe disability.
The group structure of recurrent disability underwent changes (Figure 2). Among the persons considered disabled before 2010, there prevail disabled persons of group 1 (37 %), while in 2016 after re-examination, the general share consisted of patients of group 3 (46 %). It can be adequately explained by a wider spectrum of MS therapy and also by the growth of long-term immunosup-pressive therapy popularity due to the occurrence of new kinds of medicines with a rarer injection frequency and also due to peroral MSDMD occurrence.
The comparative clinical and epidemiological characteristics of disabled persons is presented in Table 1.
Table 1
Comparative characteristics of MS patients considered disabled in 2010 and 2016
Primary disability Recurrent disability
2010 2016 P 2010 2016 P
Average age 30,7±9,1 45,6±10,1 0,068 51,2±9,4 43,8±12,3 1,09
Onset age 25,2±8,7 34,8±12,3 0,05* 29,8±9,8 29,6±10,6 0,27
Course
RMS 12% 6,6% 9,7% 9,5%
RPT 24% 20% 7,9% 13,5%
SPMS 64% 53,3% 77% 75,3%
PPMS 20% 6% 1,5%
Disease duration 14,2±7,7 10,4±7 0,12 21,4±9,1 14,8±8,8 1,92
Mean EDSS score 5,3±1,25 4,6±0,9 0,04* 5,7±1,4 5,0±1,1 0,0001*
Disease duration before disablement 8,3±7,8 10,4±7 0,49 9,37±7,8 10,3±8,7 0,19
In person primarily considered disable in 2016 (p=0,05) and the degree of disability according
the average age was higher than in persons exam- to EDSS scale (p=0,04) were higher, which is most
ined before 2010 with the tendency to significance likely connected with the improvement of MS di-
(p+0,068). Also, in 2016, the age of disease onset agnostics, availability of MRI and allows to detect
the disease at early stages, to assign the therapy in due course and increase the term of appearance of permanent disability symptoms. The statistical significance in the disease duration and the time from the manifestation of disease to the determination of the disability group was not obtained *p=0,12 and p=0,49 respectively).
By the second comparison of the groups of persons recurrently considered disabled before the observation period and in the observation period, there was not registered a statistically significant difference in age, time of appearance of first symptoms, disease duration and time from the manifestation of disease to the determination of the disability group (p>0,05), which can be the consequence of insufficient possibilities of rehabilitation organization. The mean EDSS score turned out to be statistically significant by re-examination in the comparison groups (p<0,001).
More and more patients with signs of permanent disability have a desire and ability to continue working due to sustainable job placement. During the study period there was registered the increase of the number of working disabled persons from 19,6 % in 2010 to 19 % in 2016 (Figure 3).
In the RF regions, where similar researches took place, the indexes of disability are higher than in Ufa. Thus, in the Amur Oblast, the rate of disabled persons due to multiple sclerosis constitutes 73,2%, in the Kursk Oblast - 60%, in the Tver Oblast - 51%. In the structure of disability there was also marked the prevalence of group 3 {5,6,7].
Conclusion
The average age of disabled persons due to multiple sclerosis in the city of Ufa accounts for the peak of working age and constitutes 47,3±11,6 years. The imperfection of existing criteria used for the determination of disability by multiple sclerosis "prolongs" the terms of certification of a person as disabled, which leads to a more severe disability. Due to the extensive implementation of MSDMD, appearance of new drug forms, the terms of appearance of permanent disability symptoms has become longer. The growth of rate of patients with multiple sclerosis pertaining working ability can be facilitated by the opening of specialized rehabilitation centers providing psychological help for MS patients and their families. Correct occupational guidance, sustainable job
placement and the availability of surrounding environment for patients with reduced mobility can contribute to the increase of the rate of disable persons continuing labor activity.
References
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7. Sorokina, K. B., Chichanovskaja L., Bakhareva O. N., Yastrebova E. N. Statistical analysis of epidemiological peculiarities of multiple sclerosis in the Tver region. The Bulletin of Tver State University. 2014; 23: 340-349.
Contacts:
Corresponding author - Ivanova Yelena Vlad-imirovna, Doctor of Medical Sciences, external postgraduate student of the Department of neurology with the courses of neurosurgery and medical genetics of the FSBEI HE Bashkir State Medical University of the Ministry of Health of the Russian Federation, Ufa. 450000, Ufa, Lenina Ulitsa, 3. Tel.: (347) 2724173. Email: [email protected]
