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2020, Number 2

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Rev Cubana Hematol Inmunol Hemoter 2020; 36 (2)

Health-related quality of life in hemophilic children: construction and validation of a questionnaire

Martínez TR, García HA, Zaneti DP, Machado AT, Castillo GD

Language: Spanish
References: 23
Page: 1-14
PDF size: 377.93 Kb.


ABSTRACT

Introduction: 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.


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