Development of a quality-of-life questionnaire for patients with primary immunodeficiency (QL PID)

Context and relevance. The article highlights the problem of diagnosing the quality of life in patients with primary immunodeficiency (PID), genetic disorders of immunity characterized by defects in immune defense mechanisms. Quality-of-Life studies in patients with PID are necessary for patient care, understanding the psychosomatic aspects of the course of these diseases and identifying the main health problems of patients. Objective. The aim of the study was to develop a Russian-language PID-specific Quality-of-Life questionnaire. Methods and materials. The materials of a study consisting of 2 stages obtained from a sample of patients with PID are presented. In the first stage (n = 39), respondents aged 12 to 60 years (M = 34.8) participated, of which 22 were female; in the second stage (n = 56) — aged 16 to 60 years (M = 34.4), of which 16 were female. The author's methodology “Quality of Life of patients with primary immunodeficiency” (QL PID), the A. Beck anxiety scale (BAI), the SF-36 quality of life questionnaire (Short Form Medical Outcomes Study) were used. Results. The results obtained make it possible to say that 5 of the 8 scales of the questionnaire can be used, 3 scales require additional verification. The evidence of reliability, design and criteria validity of the QL PID technique is presented.

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