Abstract
BackgroundAccording to the Treat to Target strategy, in addition to monitoring the activity of the process and monitoring the formation of irreversible organ damage, it is necessary to recognize the Health-Related Quality of Life, which allows a full assessment of the patient’s condition. Quality of life is defined as an integral characteristic of the patient’s physical, psychological, emotional and social functioning, based on his subjective perception. Often, changes in quality-of-life indicators precede the dynamics of clinical manifestations of the disease, so they can be used as auxiliary criteria for the effectiveness of treatment already in the early stages of the course of the disease.ObjectivesTo evaluate the quality of life of children and adolescent patients with systemic lupus erythematosus (SLE) depending on the activity and duration of the disease.Methods18 children and adolescents with SLE aged from 8.5 to 18.6 years (14.3 ± 0.7) were examined. The average duration of SLE was 3.1 ± 0.7 years, the age of onset was 11.4 ± 0.8 years. Most of the examined were girls (94.4%). The diagnosis was established according to the classification criteria EULAR/ASR 2019 for SLE[1]with at least 10 points. High activity of SLE was found in 5.56% of patients, moderate in 33.33%, minimal in 61.11%.The patients’ quality of life was assessed using the Lupus QoL questionnaire, which is a questionnaire with 34 questions, combined for 2–8 questions in 8 separate blocks: physical health, pain, planning, intimate relationships, dependence on other people, emotional health I, body image (the patient’s assessment of his body), fatigue. The questionnaire was filled out by the patients themselves, the answers to the questions were modeled on a five-point Likert scale (0 – constantly, 1 – almost always, 2 – quite often, 3 – occasionally, 4 – never). Zero points corresponded to the worst quality of life, 100 points to the best state of quality of life for each domain (scale) of the questionnaire.ResultsHhe quality of life related to health was worsened in all persons. The average total score for all domains was 65.51 ± 2.09 points and ranged from 38.41 to 89.45 points. The spheres “intimate relations” and “body image” were the most disturbed, which had the lowest score according to the test data (35.58 ± 4.87 and 62.08 ± 6.89, respectively). The best the quality-of-life indicator was recorded in the “pain” domain, which scored the highest number of points (82.41 ± 4.99 points). According to other scales of Lupus QoL, the quality of life was equal: in the domain “physical health” 77.60 ± 4.17 points, “planning” - 79.63 ± 5.52 points, “dependence on other people” - 66.21 ± 5.74 points, “emotional health” and “fatigue” - 76.15 ± 4.24 and 75.00 ± 4.46 points, respectively. Correlation analysis revealed inverse correlations between the degree of disease activity and the domains “pain” (r = -0.530; p < 0.05), “planning” (r = -0.529; p < 0.05), “intimate relationships” (r = -0.720; p < 0.05), “emotional health” (r = -0.728; p < 0.01). Direct correlations were found between the age of patients and indicators of the domain “pain” (r = 0.647; p < 0.01) and “planning” (r = 0.642; p < 0.01, respectively), the age of patients at the onset of the disease and the indicator the “body image” scale (r = 0.611; p < 0.01), the duration of the disease and the “fatigue” scale (r = 0.638; p < 0.05).ConclusionIn all patients with SLE, a violation of the health-related quality of life was established. Its deterioration was recorded in all domains and was due to the activity of the disease. Monitoring the quality of life of adolescents with SLE in combination with disease activity monitoring will allow for a better assessment of the health status of patients and timely identification of the need for correction of therapy and the selection of the most effective treatment program.
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