Background and aims For children and young adults with end-stage heart failure or other severe heart diseases paediatric heart transplantation (HTx) means a good therapeutic option. Parents have to decide for or with their children whether they want them to be transplanted. Congenital heart disease per se has a major influence on the child’s and the family’s life. Relatively little is known about the psychosocial impact of HTx. Therefore we aimed to better understand how parents perceive the health related quality of life (HRQoL) of their child.

Methods Between 2000 and January 2014 28 children have received a successful heart transplantation at our institution. All parents (n = 56) were asked to complete the Child Health Questionnaire-Parent Form 50 (CHQ-PF50).

Results 42 parents (n = 22 female, n = 20 male) of 22 patients (median age mothers: 46 years, median age fathers: 51 years) answered the CHQ-PF50 questionnaire. Two parents were divorced. All children lived with at least one parent. On most of the CHQ-PF50 subscales parents gave significantly lower ratings on their child’s HRQoL compared to parents of healthy children. Only on the subscales general behaviour and family cohesion scores were comparable to normative data. On most scales mothers gave significantly lower, thus more unfavourable ratings, than the fathers.

Conclusion Paediatric HTx has a major impact on the HRQoL of the affected families. In order to improve HRQoL further follow-up and more psychological support not only for the patient but also for the whole family’s needs to be offered as routine care.