Problems of providing medical care to the population in the profile of rheumatology: results of the all-Russian survey
Authors:   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation, E.L.Nasonov E.L.Nasonov ,   V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation,   Association of Rheumatologists, Moscow, Russian Federation, A.M.Lila A.M.Lila ,   V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation,   Association of Rheumatologists, Moscow, Russian Federation,   Russian Medical Academy of Continuing Professional Education, Moscow, Russian Federation, T.Yu.Kriulina T.Yu.Kriulina ,   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation,   National Medical Research Center of Children's Health, Moscow, Russian Federation,   Association of Pediatric Rheumatologists, Moscow, Russian Federation, T.M.Dvoryakovskaya T.M.Dvoryakovskaya ,   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation,   National Medical Research Center of Children's Health, Moscow, Russian Federation,   Association of Pediatric Rheumatologists, Moscow, Russian Federation, T.V.Dubinina T.V.Dubinina ,   V.A.Nasonova Research Institute of Rheumatology, Moscow, Russian Federation,   Association of Rheumatologists, Moscow, Russian Federation, E.O.Chuykova E.O.Chuykova ,   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation, S.M.Glukhova S.M.Glukhova ,   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation, E.I.Alexeeva E.I.Alexeeva ,   I.M.Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation,   National Medical Research Center of Children's Health, Moscow, Russian Federation,   Association of Pediatric Rheumatologists, Moscow, Russian Federation, I.Yu.Shilkrot I.Yu.Shilkrot ,   Association of Pediatric Rheumatologists, Moscow, Russian Federation,   National Association of Non-State Medical Organizations, Moscow, Russian Federation
Published: August 2024

Rheumatic diseases (RD) are chronic, disabling, rapidly progressive immunoinflammatory diseases that require careful monitoring of the patient's condition and timely administration of targeted therapy. The rapid development of science has made it possible to achieve significant achievements in the treatment of RD: to increase the frequency of achieving remission of the disease, to increase the duration and significantly improve the quality of life of patients. The information received from rheumatologists, who directly provide medical care to patients with RD, is one of the most important sources for identifying key problems in rheumatology and finding ways to solve them in order to improve the quality and availability of medical care. Objective. To identify the key problems of organizing the transition of patients from pediatric to adult rheumatology service, including the issues of therapy continuity, provision of medicines, medical and social assessment (MSA). Patients and methods. A one-stage cross-sectional study using a questionnaire survey of physicians providing medical care to the adult and pediatric population in the profile of rheumatology in the Russian Federation (RF) was conducted. The survey involved 129 respondents – 67 pediatric and 62 adult rheumatologists – from 74 subjects of the Russian Federation. Statistical processing of the obtained data was performed using the R-Studio software package version 2022.12.0 (Posit Software, PBC). Results. The procedure for transferring patients with RD from the pediatric service to the adult service is enshrined in the regulatory and legal acts of health care authorities in 7 (9%) of 74 subjects of the Russian Federation, formal transfer of patients is organized in 65 (88%) subjects, in 2 (3%) – not organized. Only 59/67 (88%) pediatric rheumatologists prepare for patient transfer to the adult rheumatology service. Succession problems are reported by 50 (39%) of 129 respondents: 28/67 (42%) pediatric and 22/62 (35.5%) adult rheumatologists. Adult rheumatologists were significantly more likely to be concerned about low patient compliance (p = 0.02), while pediatric rheumatologists were more likely to be concerned about staffing shortages of rheumatologists in the pediatric and adult services (p = 0.04) and change/discontinuation of therapy when transitioning to the adult service (p = 0.05). Drug supply problems for patients with IBD are reported by 72 (56%) respondents: 33/67 (49%) pediatric and 39/62 (63%) adult rheumatologists. Pediatric rheumatologists are significantly more likely to be concerned about automatic switching of patients to biosimilar drugs (p = 0.02), adult rheumatologists are more likely to be concerned about difficulty in obtaining discounted prescriptions (p = 0.01). All respondents of the group of adult rheumatologists are informed about the existence of the "14 highcost nosologies" program. Provision of RB patients with medicines at the expense of regional benefits regardless of disability is possible in 52/74 (70.3%) subjects of the Russian Federation, impossible – in 10/74 (13.5%), in 12/74 (16,2%) – the answers of pediatric and adult rheumatologists on benefits differed. Limitations in the use of the regional benefit were reported by 52 respondents from 41/64 (64%) subjects – 31/52 (60%) adult and 21/52 (40%) pediatric rheumatologists. Problems related to interaction with the MSA bureau were noted by 49 (39%) respondents – 21/62 (34%) adult and 28/67 (42%) pediatric rheumatologists. The key ones selected by 43 (88%), 11 (22%), 11 (22%) and 9 (18%) of the 49 respondents, respectively, are: refusal to formalize disability, redundancy of medical examinations for MSA, long timeframes for filing documents for MSA and assignment of disability. 47 (36%) respondents – 21/67 (31%) pediatric and 26/62 (42%) adult rheumatologists from 40/74 (54%) subjects of the Russian Federation – reported about the removal of disability upon achievement of drug remission. Drug provision of patients at the expense of the regional budget continues after disability remission according to the responses of 19/21 (90%) pediatric and 19/26 (73%) adult rheumatologists from 34/40 (85%) subjects of the Russian Federation. Conclusion. The conducted research allowed to determine the key problems of the organization of medical care for children and adults in the profile of rheumatology. Key words: continuity in rheumatology, organization of medical care, drug provision, medical and social expertise