OPTIMIZING THE DIAGNOSIS, A MONITORING AND TREATMENT SYSTEM FOR PSORIATIC ARTHRITIS IN REAL PRACTICE: GENERAL PRINCIPLES FOR ORGANIZING AN ALL-RUSSIAN REGISTER OF PATIENTS WITH PSORIATIC ARTHRITIS

The paper presents the design, general characteristics of and possibilities of data usage from the All-Russian register of patients with psoriatic arthritis (PsA).
The purpose of creating and introducing the register into Russian healthcare practice is to evaluate the effectiveness of the diagnosis and treatment of PsA. The All-Russian register of PsA patients was created for the period 2016–2018 within the framework of the All-Russian register of patients with arthritis «OREL» on the basis of the V.A. Nasonova Research Institute of Rheumatology and with the support of the All-Russian public organization «Association of Rheumatologists of Russia». This system is an all-Russian population-based register that allows for the recording and monitoring of patients with PsA throughout the follow-up period. This enables healthcare specialists and organizers to obtain reliable information on the state of care for this category of patients in the region.

The main purpose of the register is to provide necessary information support and automated technology for solving the problems of accounting, controlling, and monitoring of the status of PsA patients and to organize information interaction between specialists. The register is based on existing state regulatory legal acts. While developing and testing of the register, there were a number of tasks to be solved: to evaluate the efficiency of existing standard and promising targeted PsA therapies in real practice; to assess and improve the routing of patients with PsA. The use of the register allows an operational analysis of the following characteristics: demographic and socioeconomic parameters of patients with PsA; anamnestic data of patients with this condition; results of clinical examinations, instrumental and laboratory data.
The geography of the register covers 27 regions of the Russian Federation; the register includes information on 460 patients with PsA.
Creating a register permits one to track the dynamics of various parameters (social, demographic, and medical ones), to compare treatment options and the clinical and functional characteristics of patients with PsA, and to evaluate their performance, disability and changes in the social and labor status during the treatment performed. 
Thus, for the first time in the Russian Federation, the demographic, functional, and socioeconomic parameters of patients with PsA were comprehensively analyzed and the level of performance and impaired daily activities in PsA patients were studied using the WPAI questionnaire; moreover, the patients’ functional and psychological status was evaluated for the first time, by applying the PsAID-12, FACIT questionnaires (in the patients of the V.A. Nasonova Research Institute of Rheumatology).
An analysis of the information available in the register makes it possible to compare the efficiency of different PsA treatment regimens, by estimating the rates of remission and/or minimal disease activity in real practice.

1. WHO. Disease burden and mortality estimates. Available from: http://www.who.int/healthinfo/global_burden_disease/estimates/en/

2. Sebbag E, Felten R, Sagez F, et al. The world-wide burden of musculoskeletal diseases: a systematic analysis of the World Health Organization Burden of Diseases Database. Ann Rheum Dis. 2019;0:1-5. doi: 10.1136/annrheumdis-2019-215142

3. Ritchlin CT, Colbert RA, Gladman DD. Psoriatic Arthritis. N Engl J Med. 2017;376:957-70. doi: 10.1056/NEJMra1505557

4. Veale DJ, Fearon U. The pathogenesis of psoriatic arthritis. Lancet. 2018;391(10136):2273-84. doi: 10.1016/S0140-6736(18)30830-4

5. Korotaeva TV, Korsakova YuL. Psoriatic arthritis: classification, clinical presentation, diagnosis, treatment. Nauchno-Prakticheskaya Revmatologiya = Rheumatology Science and Practice. 2018;56(1):60-9 (In Russ.). doi: 10.14412/1995-4484-2018-60-69

6. Hojgaard P, Ballegaard Ch, Cordtz R. Gender differences in biologic treatment outcomes – a study of 1750 patients with psoriatic arthritis using Danish Health Care Registers. Rheumatology. 2018;57:1651-60. doi: 10.1093/rheumatology/key140

7. Merola JF, Shrom D, Eaton J, et al. Patient perspective on the burden of skin and joint symptoms of psoriatic arthritis: results of a MultiNational patient survey. Rheumatol Ther. 2019 Jan. doi: 10.1007/s40744-018-0135-1

8. Tillett W, Jadon D, Shaddick G, et al. Smoking and delay to diagnosis are associated with poorer functional outcome in psoriatic arthritis. Ann Rheum Dis. 2013;72:1358-61. doi: 10.1136/annrheumdis-2012-202608

9. Labitigan M, Bahce-Altuntas A, Kremer JM, et al. Higher rates and clustering of abnormal lipids, obesity, and diabetes mellitus in psoriatic arthritis compared with rheumatoid arthritis. Arthritis Care Res (Hoboken). 2014;66:600-7. doi: 10.1002/acr.22185

10. Helliwell PS, Ruderman E. Natural history, prognosis, and Socioeconomic aspects of psoriatic arthritis. Rheum Dis Clin N Am. 2015;4:581-91. doi. 10.1016/j.rdc.2015.07.0041

11. Coates LC, Kavanaugh A, Mease PJ, et al. Group for Research and Assessment of Psoriasis and Psoriatic Arthritis 2015 treatment recommendations for psoriatic arthritis. Arthritis Rheum. 2016;68:1060-71. doi: 10.1002/art.39573

12. Kalik AA. Problems of modern medical information systems and possible solutions. Evraziiskii Nauchnyi Zhurnal. 2017;(6):204-6 (In Russ.).

13. Kireev VS, Agamov NA. Comparative review of medical information systems on the Russian market. Teoriya. Praktika. Innovatsii. 2017;7(19):184-93 (In Russ.).

14. Abrosimov AV, Ilyushina MA, Shekhovtsova ZhB, et al. Formalization of planning processes and the formation of functional requirements for medical information systems. Informatsionnye i Telekommunikatsionnye Tekhnologii. 2015;27:10-21 (In Russ.).

15. Belov AS, Koltakova TV. Characteristics of modern medical information systems. Vestnik Voronezhskogo Instituta Vysokikh Tekhnologii. 2016;3(18):88-91 (In Russ.).

16. Komarova IE, Nekrasov SA. Conceptual features of the formation of European medical information systems (MIS). Natsional'naya Assotsiatsiya Uchenykh. 2015;3-3(8):70-3 (In Russ.).

17. Tillett W, Shaddick G, Askari A, et al. Factors influencing work disability in psoriatic arthritis: first results from a large UK multicentre study. Rheumatology (Oxford). 2015;54:157-62. doi: 10.1093/rheumatology/keu264

18. Korotaeva T, Loginova E, Koltakova A, et al. The work productivity and activity index specific health problem (WPAI-SHP) and its association with psoriatic arthritis (PSA) activity by disease activity index for psoriatic arthritis (DAPSA) in routine care: data of the Russian Psoriatic Arthritis Registry (RU-PsART). Ann Rheum Dis. 2018;77 Suppl 2:1042-3. doi: 10.1136/annrheumdis-2018-eular.1998