Организация здравоохранения
CREATION AND IMPLEMENTATION OF A DYNAMIC REGISTER (ELECTRONIC DATABASE) PATIENTS WITH DEMYELINATING DISEASES
S. I. Abramov1, S.A. Sterlikov1, O.V. Khodakov1, Yu. I. Oskov1, O.V. Zelenova1, V.I. Starodubov1, S.S.Tsai1
1. Russian Research Institute of Health, Moscow.
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Summary:
Diseases of the spectrum of opticoneuromyelitis (ZSONM) is a disorder that is a relatively rare but devastating neurological disease characterized by severe episodes of vision loss, spinal cord dysfunction, brain stem and hypothalamus dysfunction. Currently, medicines registered for the treatment of ZSONM have appeared in Russia, having a pathogenetic orientation in therapy. Pathogenetic treatment can lead to a decrease in the number of exacerbations that are the reason for the formation of disability. For its appointment, it is necessary to confirm the presence of antibodies to aquaparin 4 in the patient, the study for which is not included in the program of state guarantees and can be paid only at the expense of the patient's own funds. The cost of the analysis did not allow many patients to pay for it on their own, therefore, according to our study in 2019, the number of patients who had a confirmed diagnosis based on an analysis for antibodies to aquaporin 4 was 35%. With the assistance of a commercial company, in 2022, a process of free verification of the diagnosis was organized in patients who already have a diagnosis of CHF or with suspicion of this diagnosis. The purpose of the study is to evaluate the scientific and organizational results of the introduction of the register of patients with CHF. Materials and methods. The register is a kind of secondary form of documentation and is based on depersonalized data about patients with ZSN (all personal data are contained in primary medical documentation and are not subject to transfer to the register). The main purpose of the register is based on the data of cross–sectional and prospective cohort analysis to evaluate the features of detection, diagnosis, effectiveness of various relapse prevention schemes and features of the progression of CHF. Results. Previously, we determined that the general population of ZSNOM can range from 660 to 6179 patients. The presented sample of data from the ZSN register reflects the estimated general population with an error of 6.7% to 7.6%. Mainly people of young working age become ill with ZSN. The median age at which the disease was detected was 38 years (25% quartile – 27 years, 50% quartile – 49 years). At the same time, the disease itself arose even earlier. From the moment of the onset of symptoms of the disease to the moment of diagnosis, a significant time passed, the median of which was 480 days (more than 1 year); 25% quartile – 123 days, 75% quartile – 1680 days (over 4.5 years). Thus, the issues of timely diagnosis of the disease are quite acute. At the same time, there was no significant relationship between EDSS and the number of days from the onset of symptoms to diagnosis Conclusions. It is necessary to develop a comprehensive clinical and statistical group for the diagnosis and treatment of patients with CHF for the possibility of providing specialized medical care in the Neurology profile in a round-the-clock or day hospital. To include in the list of medical services an analysis for antibodies to aquaporin 4 in order to reduce the time for making a final diagnosis and timely initiation of therapy with modern drugs of the monoclonal antibody group available in Russia.
Keywords Neuro – optic myelitis, NOM, ZSONM, Devik's disease, aquaparin 4, antibodies to aquaparin 4, dynamic patient register, clinical and statistical group (CSG)
Bibliographic reference:
S. I. Abramov, S.A. Sterlikov, O.V. Khodakov, Yu. I. Oskov, O.V. Zelenova, V.I. Starodubov, S.S.Tsai, CREATION AND IMPLEMENTATION OF A DYNAMIC REGISTER (ELECTRONIC DATABASE) PATIENTS WITH DEMYELINATING DISEASES // Scientific journal «Current problems of health care and medical statistics». - 2023. - №1;
URL: http://healthproblem.ru/magazines?textEn=986 (date of access: 03.12.2024).
URL: http://healthproblem.ru/magazines?textEn=986 (date of access: 03.12.2024).
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