Parameters of the internal picture of the disease and quality of life in patients with systemic lupus erythematosus

Objective: to analyze the structural features of the internal picture of the disease (IPD in patients with systemic lupus erythematosus (SLE) and its ratio with quality of life (QOL) as an indicator of adaptation to the disease.

Patients and methods. The investigation enrolled 51 patients with SLE. Comparison groups included patients differing in the psychological parameter – the perception of the existing disease as a threat to life and health: Group 1 (n=17) regarded their disease as a moderate threat to life and well-being; Group 2 (n=34) considered it as a severe threat.

Results and discussion. Comparative analysis of the cognitive level of IPD revealed statistically significant differences between the patients of Groups 1 and 2 in the following scales: «course of the disease» (p<0.001), «personal control» (p<0.001), «treatment control» (p<0.001), «understandability of the disease» (p<0.001), «emotional response to the disease» (p<0.005), and «overall level of disease threats» (p<0.001). It turned out that Group 1 patients better understood the features of the course and manifestation of the disease, were more confident in the efficiency and importance of the treatment prescribed, as well as in their own capabilities to improve their health status. Group 2 patients were more inclined to try to cope with the existing negative experiences, by avoiding the problem.

Conclusion. IPD can be different in patients with SLE. The perception of illness as a severe threat negatively affects the efficiency of therapy, mental well-being, social activity, and ultimately QOL. The findings can be used to develop programs for psychological support of patients with rheumatic diseases, in particular those with SLE.

1. Baranov AA. Federal'nye klinicheskie rekomendatsii po okazaniyu meditsinskoi pomoshchi detyam s cistemnoi krasnoi volchankoi [Federal clinical guidelines for providing medical care to children with systemic lupus erythematosus]. Moscow; 2015.

2. Nasonov EL, editor. Systemic lupus erythematosus. In: Rossiiskie klinicheskie rekomendatsii [Russian clinical guidelines]. Moscow: GEOTAR-Media; 2017. P. 113-41.

3. Yen EY, Singh RR. Lupus – An Unrecognized Leading Cause of Death in Young Women: Population-based Study Using Nationwide Death Certificates, 2000–2015. Arthritis Rheumatol. 2018 Aug; 70(8):1251-55. doi: 10.1002/art.40512. Epub 2018 Jun 27.

4. Aseeva EA, Solov'ev SK, Klyukvina NG, et al. Irreversible organ damages in a cohort of patients with systemic lupus erythematosus (RENAISSANCE). Nauchno-prakticheskaya revmatologiya = Rheumatology Science and Practice. 2016;54(4):404-11. (In Russ.). doi: 10.14412/1995-4484-2016-404-411

5. Popkova TV, Lisitsyna TA. Rekomendatsii po vedeniyu bol'nykhsistemnoy krasnoy volchanko y v klinicheskoy praktike po materialam rekomendatsiy Evropeyskoy antirevmaticheskoy ligi – EULAR). Sovremennaya revmatologiya = Modern Rheumatology Journal. 2011;5 (1): 4-12. (In Russ.). doi: 10.14412/1996-70122011-645

6. Solov'ev SK, Aseeva EA, Popkova TV, et al. Systemic lupus erythematosus: new horizons for diagnosis and therapy. Nauchno-prakticheskaya revmatologiya = Rheumatology Science and Practice. 2020;58(1):5-14. (In Russ.). doi: 10.14412/1995-4484-2020-5-14

7. Maneeton B, Maneeton N, Louthrenoo W. Prevalence and predictors of depression in patients with systemic lupus erythematosus: a cross-sectional study. Neuropsychiatr Dis Treat. 2013;9:799-804. doi: 10.2147/NDT.S44248. Epub 2013 Jun 5.

8. Aseeva EA, Amirdzhanova VN, Lisitsyna TA, et al. Quality of life in patients with systemic lupus erythematosus. Nauchno-prakticheskaya revmatologiya = Rheumatology Science and Practice. 2013;51(3):324-31. (In Russ.). doi: 10.14412/1995-4484-2013-1508

9. Nasonov EL, Nasonova VA. Revmatologiya: natsional'noe rukovodstvo [Rheumatology: national guidelines]. Moscow: GEOTARMedia; 2008.

10. Tarasova IA, Ivanova MM. Outcomes and prognosis in systemic lupus erythematosus. Nauchno-prakticheskaya revmatologiya = Rheumatology Science and Practice. 2003; 41(2):53-8. (In Russ.). doi: 10.14412/1995-4484-2003-770

11. Abrosimov IN, Yaltonskii VM. Choice of coping strategy as a factor of psychological adaptation of the patient to a chronic somatic disease. Vestnik omskogo universiteta. 2018; (4):12-8. (In Russ.).

12. Nikolaeva VV. Psikhosomatika: telesnost' i kul'tura. Uchebnoe posobie dlya vuzov [Psychosomatics: physicality and culture. Study guide for universities]. Moscow: Akademicheskii proekt; 2009.

13. Pankratov VV, Yagudaeva IP, Davydov AI. Health-related quality of life: terminology, methodology, evaluation features in obstetric and gynecological practice. Voprosy ginekologii, akusherstva i perinatologii. 2012;11(2):22-3. (In Russ.).

14. Stekol'shchikov LV, Gerasimova LI. Current research on health-related quality of life at the population level (literature review). Zdravookhranenie Chuvashii. 2014;(4-1): 92-101. (In Russ.).

15. Shchelkova OYu, Usmanova EB, Gorbunov IA, Sushentsov EA. Psychological adjustment and quality of life in patients with bone tumor. The Scientific Notes of Pavlov University. 2018;25(3):62-72. (In Russ.). doi: 10.24884/1607-4181-2018-25-3-62-72

16. Goerling U, Stickel A. Quality of Life in Oncology. Recent Results Cancer Res. 2018; 210:163-80. doi: 10.1007/978-3-319-643106-10.

17. Vasserman LI, Trifonova EA, Fedorova VL. Internal picture of the disease in the structure of quality of life in patients with somatic pathology. Sibirskii psikhologicheskii zhurnal. 2008;(27):67-71. (In Russ.).

18. Yaltonskii VM, Yaltonskaya AV, Sirota NA, Moskovchenko DV. Psychometric characteristics of the russian version of the short questionnaire on the perception of illness. Psikhologicheskie issledovaniya. 2017;(10):1. (In Russ.).

19. Shevchenko YuL, redaktor. Rukovodstvo po issledovaniyu kachestva zhizni v meditsine. 2-e izdanie [Guide to quality of life research in medicine. 2 nd edition]. Moscow: OLMA Media Grupp; 2007.