Abstract
Primary immunodeficiencies (PIDs) accompany patients lifelong therefore assessing the quality of life and developing methods to improving it are of a particular importance. The purpose of this research was to assess the health-related quality of life in patients with PIDs among the Russian population and to compare the results obtained v. worldwide data. Materials and methods used: a single-center cross-sectional survey study was conducted in patients with PIDs in Oct. 2020-Feb. 2021. Patients below the age of 18 y/o had filled the PedsQL 4.0 questionnaire to provide data on psychosocial functioning, a total score was then calculated on the scales of emotional, social and role functioning. Adult patients had completed the EQ-5D-5L questionnaire that included the “mobility, self-care, activities of daily living, pain and discomfort, anxiety and depression” domains. Each question had five answer options and also included a 100-point visual analogue scale for subjective assessment of health. Results: EQ-5D-5L showed significant deviations on the “Anxiety/Depression” scale (Me 2.5). The least affected area was “Self-Care” (1.0 on average). On average, the subjective assessment of one's own health was satisfactory 70.04 points out of 100. On the other hand, PedsQL showed the lowest scores in the “emotional functioning” and “functioning in kindergarten/school” scales, the average ones were in those related to physical functioning and the highest in the social functioning domains.
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