2020, Number 2
Health-related quality of life in hemophilic children: construction and validation of a questionnaire
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ABSTRACTIntroduction: Hemophilia is a chronic and hereditary hemorrhagic disease that adversely influences biopsychosocial development. Periodic study of health-related quality of life is a useful indicator in pediatric patients suffering from this disorder.
Objective: To develop and validate a short specific questionnaire for monitoring the quality of life in hemophiliac children.
Methods: We worked in three stages: creation of questions, pilot study and field study. The preliminary version consisted of 24 Likert questions suitable for children and parents. From a first analysis, a second version with 22 questions was obtained, which was applied to 38 patients, with an average age of 11.7 years.
Results: Reliability was determined by the internal consistency of each model, according to Cronbach's alpha index, in children (physical area: 0.81; emotional area: 0.59; and psychosocial area: 0.71) and in parents (area physical: 0.88; emotional area: 0.87; and psychosocial area: 0.90). A strong convergent validity criterion was obtained with the generic Pediatric Quality of Life Inventory (PedsQL) questionnaire in all subscales, for both children and parents (p<0.05); also between the results of children and parents (p<0.05). Discriminant validity was achieved in parents, according to the variable severity of the disease; and for both in terms of orthopedic limitations (p<0.05).
Conclusions: The questionnaire showed satisfactory psychometric qualities and correctly differentiated physical, emotional and social adjustment affections. The version obtained is considered the ultimate one.
Klamroth R, Pollman H, Hermans C, Faradji A, Yarlas A, et al. The relative burden of haemophilia A and the impact of target joint development on healthrelated quality of life: results from the ADVATE Post-Authorization Safety Surveillance (PASS) study. Haemophilia. 2011; 17(3):412-21. doi: 10.1111/j.1365-2516.2010.02435.x