Adaptation and Evaluation of a Quality of Life Questionnaire for Patients with Hemophilia in the Republic of Kazakhstan

Elmira Kultanova

2025

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DOI 10.54500/2790-1203-2025-6-125-amj008
Data confidence 70 medium
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Abstract

Introduction.Hemophilia is a chronic inherited disorder that substantially affects patients’ physical, emotional, and social functioning. In the context of modern therapeutic approaches, health-related quality of life is regarded as an important patient-centered outcome. Objective assessment of these parameters requires validated disease-specific instruments adapted to the linguistic and cultural characteristics of the target population.Objective.To perform the linguistic adaptation and psychometric validation of the Russian-language version of the A36Hemofilia-QoLquestionnaire for use in adult patients with hemophilia in the Republic of Kazakhstan.Methods.A methodological study was conducted using a standardized forward–backward translation procedure, expert review, and pilot testing. The study included 30 adultpatients with mild, moderate, or severe hemophilia A or B. Internal consistency was assessed using Cronbach’s alpha for the total scale and individual domains. Construct validity was evaluated by exploratory factor analysis with oblique rotation. Statistical analysis was performed using IBM SPSS Statistics version 28.0.Results.The Russian-language version of the questionnaire demonstrated conceptual equivalence to the original instrument and good acceptability among patients. High or acceptable levels ofinternal consistency were observed for several subscales, while lower Cronbach’s alpha values were identified in certain domains, which may be attributable to the clinical heterogeneity of the sample and the pilot nature of the study. Exploratory factor analysis generally confirmed a satisfactory factor structure reflecting the physical, functional, emotional, and social dimensions of quality of life in patients with hemophilia.Conclusion.The Russian-language version of the A36Hemophilia Quality of Life questionnaire appears to be a promising disease-specific instrument for assessing quality of life in adult patients with hemophilia in the Republic of Kazakhstan. Further studies with larger sample sizes are required to fully confirm its psychometric properties.Keywords: hemophilia,quality of life,questionnaire,validation,A36Hemophilia-QoL.