Perceptions of adolescent survivors of burn injuries and their parents of the health-related quality of life outcomes

Abstract

Aim: This study compared the self-reported Health-related Quality of Life (HRQoL) of the adolescents survivors of burn injury and the proxy estimation of their mothers and fathers at six and 18 months post burn injuries. Methods: Children with burns (8-18 years old) attending one of the seven burn centers in the Netherlands and Belgium and their both parents were invited to participate. A total of 89 adolescents aged 11 years or older filled out the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire (BOQ) at six months and 18 months post burn injury. Descriptive analysis were done and correlations between results of the adolescents, mothers and fathers were established. Results:Overall, the physical functioning scores were shown to be optimal in almost all participants (99%) and across the three informants. Adolescents reported better optimal scores than their fathers and –more pronounced– their mothers at most of the subscales, but on average the correlations were medium to high. Only the subscale ‘appearance’ showed a lower correlations between the adolescents and their parents, whereas both parents had medium to high inter-correlations. Statistically significant differences between the adolescent and the mother were found for the subscales ‘appearance’, ‘family disruption’ and ‘parental concern’ at six months. Conclusion: In general, the parents had congruent perceptions of the adolescent’s functioning. The reported scores of the three informants were quite similar, but mothers tended to report worse HRQoL than fathers and their children on the most of the subscales of the BOQ. It suggests that the proxy estimation can be used when the adolescents cannot provide the assessment themselves.