General characteristics of the health-related quality of life in children with severe hemophilia A in Ukraine

July 2, 2018

Aim — to study the health-related quality of life in children with severe forms of hemophilia A and identify the main psychosocial predictors that affect it in children of all ages. Materials and methods. Assessment of quality of life (QOL) is conducted by the sociological survey using a validated Ukrainian version of the Haemo-QoL Questionnaire. Model of the survey: individual and electronic questionnaire. The study involved 105 children with severe hemophilia A. The patients were divided into three age groups according to the version of the questionnaire: I — 4–7, II — 8–12, III — 13–16 years. These surveys were analyzed, the general quality of life in each age group and the values of QOL for individual scales were identified; the correlations of the general QOL with individual determinants of psychosocial development were determined. Statistical analysis was performed using t-test, Mann — Whitney U-test and the Kruskal — Wallis H test, Spearman’s rank correlation coefficient R. Results. It has been established that QOL in children of the Ist age group is significantly the worst in the segment of family relations, with a value of the corresponding scale of 62.50 (62.50; 87.50), while in the group II the worst QOL was in the fields of activities in sport/school and family relationships with the values of the relevant scales of the questionnaire of 68.75 (56.25; 75.00) and 65.00 (50.00; 80.00), respectively. In group III, significantly the worst QOL was in the segment of attitude to physical health with an indicator of 75.00 (53.57; 83.92). At the same time, psychosocial predictors that best correlate with the general index of QOL in children is somewhat different from the worst determinants of psychosocial development in children of group I and in which the most significant predictor of QOL is determined to be relationships with friends and treatment, while in groups II and III such predictors correspond to the worst QOL factors. Conclusions. The QOL in children with hemophilia has age-related features, as well as psychosocial predictors that affect it, which is important to consider when designing and implementing psychosocial support and rehabilitation programs.

A.I. Markin

Key words: hemophilia, children, quality of life, questionnaire, psychosocial functioning.

Published: 05.07.2018


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