Development of a valid and reliable instrument for the assessment of quality of life in parents of children with clefts.

PURPOSE: Orofacial clefts are the most common congenital malformations that affect craniofacial structures. Studies show that they have a major influence on psychological development of the patient, and on their families. A review of the literature showed a lack of specific questionnaires for children and their parents. This study investigated the impact of orofacial clefts in children on the quality of life of their parents. In addition, the results of the treatment and the quality of work of the health team members involved in this process were evaluated.

MATERIALS AND METHODS: For the purpose of this study, an original questionnaire was made to analyse the effect of orofacial clefts in children who had undergone surgery on the quality of life of 73 of their parents. The questionnaire consisted of 28 simple statements, which were evaluated with a 5-degree Likert scale (from 1-fully disagree to 5-fully agree), did not require any specific additional clarification, and were easy to complete.

RESULTS: Analysis of areas of the questionnaire that applied to the parents, resulted in two subscales, parental social health and child social health, which had satisfactory Cronbach's coefficients (0.907 and 0.897, respectively). However, some issues had a relatively poor coefficient of internal consistency, which justified their expulsion from the final model of the parent questionnaire.

CONCLUSION: The questionnaire developed for this study comprised two subscales concerned with the social health of parents/respondents and the social health of adolescents, as perceived by the parents. It was a valid and reliable instrument, and it showed satisfactory quality of life for parents of adolescents with clefts.