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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.

Background and aims In children with end-stage heart disease heart transplantation (HTx) offers a good therapeutic option with favourable outcomes. Patients are expected to improve in general health, but unfortunately little is known about the health-related quality of life (HRQoL) after HTx, which is also influenced by factors such as the psychosocial adaptation of children and parents. We aimed to better understand children’s HRQoL after HTx with the aim to give them adequate support. Methods Between 2000 and January 2014 28 children underwent successful heart transplantation at our institution. All patients older than 8 years (n = 21) were asked to complete a validated and reliable questionnaire, the Child Health Questionnaire-Child Form 87 (CHQ-CF87) questionnaire themselves. Results 76% of the patients participated; median age was 15.2 years (range: 13.6–19.6), median time after HTx was 31 months (range 7–134). All children attended school. Even though they scored comparable to normative data on most of the subscales, their general health perception (GHP) (50.0 vs. 74.6, p Conclusion In children after HTx, overall HRQoL, especially on the psychosocial scales, seems to be good. Only the subscales general health perception and physical functioning were significant lower. This might be explained by their chronic need for treatment, follow-up and concomitant diseases frequently seen in HTx patients. Nevertheless, in order to learn dealing with their situation all children should be supported by a specialised multidisciplinary team, including psychologists and child life specialists.