Health-related quality of life of young people with long-term illnesses before and after transfer from child to adult healthcare.

BACKGROUND

The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses.

METHODS

A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey. Multiple linear regression was used to identify predictors of five dimensions of health-related quality of life pre- and post-transfer.

RESULTS

Post-transfer young people with congenital heart disease and diabetes reported significantly lower physical well-being than their pre-transfer counterparts. Pre-transfer young people with cystic fibrosis reported significantly lower physical well-being than those with diabetes, but there was no significant difference post-transfer. Pre-transfer females reported lower scores than males on the Psychological Well-being and Autonomy and Parent Relation dimensions; however, these differences disappeared post-transfer. Higher maternal overprotection scores were associated with significantly lower scores on the Psychological Well-being, Autonomy and Parent Relation, and Social Support and Peers dimensions, regardless of transfer status.

CONCLUSIONS

Disease group, gender and maternal overprotection were predictors of health-related quality of life pre- and post-transfer from child to adult healthcare. Transition programmes should promote self-management and discourage parental overprotection.