Системная красная волчанка (СКВ) -одно из самых тяжелых аутоиммунных заболеваний человека, поражаю-щее практически все органы и системы. За последние 40 лет представления об этом заболевании значительно измени-лись. В 1972 г. В.А. Насонова в монографии «Системная красная волчанка» [1] отмечала, что из 24 больных с высо-кой степенью активности СКВ умерли 16 и что при адекват-ном длительном лечении глюкокортикоидами (ГК) средняя продолжительность жизни пациента с острым вариантом течения СКВ может увеличиться до 52,6±4,04 мес против 18,8±2,3 мес при курсовом лечении. Современная концеп-ция Treat to Target при СКВ (Т2Т) направлена на достиже-ние уже долгосрочной выживаемости, предупреждение не-обратимых органных повреждений, улучшение качества жизни, связанного со здоровьем (КЖСЗ), за счет контроля активности заболевания, минимизации проявлений сопут-ствующих заболеваний и лекарственной токсичности [2]. Это стало возможным благодаря совершенствованию диаг-ностических критериев СКВ, разработке индексов активно-сти, появлению генно-инженерных биологических препа-ратов (ГИБП). В 1985 г. на конференции в Торонто, посвя-щенной прогнозу у больных СКВ, было отмечено, что, по-мимо активности заболевания и накопленного повреждения, необходимо оценивать у таких пациентов КЖСЗ. И только в 2014 г. это стало одним из основополагающих принципов Т2Т при СКВ.
Концепция КЖСЗ и предпосылки ее создания
Objective: to assess changes in health-related quality of life (HRQoL) in patients with systemic lupus erythematosus (SLE) during performed therapy.Subjects and methods. The investigation included 128 patients with reliable SLE who fulfilled the 2012 SLICC criteria. Sixty-eight patients received standard therapy; 60 used biological agents (BA). During the first visit and at 12 months, all the patients were assessed for disease activity using by SLEDAI-2K and for organ damage employing the SLICC damage index (DI). HRQoL was assessed by the LupusQoL questionnaire that was filled out by the patients independently.Results and discussion. At Visit 1, the disease activity index averaged 8.0±7.3 in the standard therapy group and 15.4±7.6 in the BA group (p≤0.001); DI was 1.2±0.9 and 1.8±1.8, respectively (p=0.008). BA-treated patients had significantly lower HRQoL scores on all questionnaire scales, except «dependence on others» and «emotional health» ones Both the standard therapy and BA groups showed significantly lower disease activity during Visit 2 at 12 months. HRQoL assessment revealed significant improvements in the scales «pain», «planning», «intimate relationships», «emotional health», «body image», and «fatigue» in the BA group. The standard therapy group had a statistically significant improvement in the scale «dependence on others». All the other scales of the questionnaire displayed a positive change in HRQoL; however, it did not reach statistical significance.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects any organs and systems and is characterized by a wide range of various clinical manifestations. According to the treat-to-target strategy for SLE, in addition to monitoring disease activity and irreversible organ damage, it is necessary to assess health-related quality of life (HRQOL), which enables one to obtain a complete and objective description of the patient. All the factors and problems that may worsen HRQOL should be also taken into account. Fatigue, pain, and depression are identified as the major symptoms that largely affect HRQOL. The impact of cognitive impairment associated with the disease is also considered. Impaired body image, i.e. the perception of his own appearance by a patient himself, is an important problem in patients with SLE. The unpredictable course of the disease and the impaired physical functioning of patients make it difficult to perform everyday activities, as well as disturb socialization; the patients often experience of being dependent on others. Due to SLE, the patients are often limited in their choice of profession or forced to quit/change their jobs, which leads to financial losses and feelings of social isolation. The review also considers gender, age, and education as factors influencing HRQOL in patients with SLE.
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