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

<p><strong>Context and relevance.</strong> 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. <strong>Objective.</strong> The aim of the study was to develop a Russian-language PID-specific Quality-of-Life questionnaire. <strong>Methods and materials.</strong> 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. <strong>Results.</strong> 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.</p>