A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries,parental illness‐related distress and health‐related Quality of Life

Summary. The aim of this pilot study was to investigate the effects of the transition from paediatric to adult health care services in haemophilia patients and their parents. We compared pretransition children (n = 9) and their parents (n = 18) to posttransition patients (n = 8) and their parents (n = 21). Pre‐ and posttransition patients did not differ in self‐rated health‐related quality of life (QoL) or worries about the transition. Fathers of posttransition patients rated their son’s QoL as poorer than those of pretransition patients (P = 0.034) and indicated higher levels of illness‐related distress than fathers of pretransition patients (P = 0.034). The findings indicate that the transition affects parents more than patients. Moreover, we found gender differences in parental worries about the transition. The findings indicate that programmes designed to facilitate the transition in haemophilic patients should also address the patients’ parents.