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.

        · abstract in Spanish     · text in Spanish     · Spanish ( pdf )