Abstract
BackgroundTransplantation is a saving therapeutic that has heavy consequences. The quality of life (QoL) of transplanted children and their parents has been little studied and should help physicians better manage these patients. The objectives of the study were to assess: (1) the QoL of transplanted children and parents and compare it with that of children with other chronic conditions associated with long-term consequences, and (2) potential variables modulating the QoL.MethodsThis cross-sectional study was performed in a multidisciplinary paediatric unit (Timone Hospital, Marseille, France). Children were less than 18 years old; had a liver, kidney or heart transplant; and had a time since transplantation of 1–10 years. Socio-demographics and clinical data were recorded from medical forms. The QoL was assessed using the VSP-A (Vécu et Santé Perçue de l’Adolescent et de l’Enfant) and the WhoQoL self-reported questionnaires.ResultsForty-five families were included (response rate: 76%). The transplanted organs were the liver for 20 children, the kidney for 15 children, and the heart for 10 children. The QoL of transplanted children reported by their parents was better than that of children with inborn errors of metabolism and similar to that of childhood leukaemia survivors. The QoL of parents of transplanted children was better than that of parents of children with inborn errors of metabolism and did not differ from French norms. The QoL did not differ according to the nature of the transplanted organ, sex or the main sociodemographic data. The main modulators decreasing QoL were residual treatment level, medications switch and the presence of another regular treatment.ConclusionTransplanted children and their families reported a fairly preserved QoL compared to children with other chronic health conditions. Special attention should be given to QoL modulators related to therapeutic management (medication switches, regular treatments) that might be amenable to improve the QoL.Trial registration Ethics committee of Aix-Marseille University, France (reference number: 2014-08-04-03, 24/4/2015; https://www.univ-amu.fr/fr/public/comite-dethique).
Highlights
Transplantation is a saving therapeutic that has heavy consequences
For the first time in France, we studied the quality of life (QoL) of a large sample of transplanted children including liver, kidney, and heart transplanted children, and their parents
The objectives of our study were: (1) to assess the QoL levels of the transplanted children and their parents and to compare it with those of individuals with other chronic conditions associated with long-term consequences, and (2) to assess the potential factors modulating the QoL of children and their parents
Summary
Transplantation is a saving therapeutic that has heavy consequences. The quality of life (QoL) of transplanted children and their parents has been little studied and should help physicians better manage these patients. Three studies in the literature explored the QoL of parents of transplanted children [11, 15, 20]: they show deteriorated QoL in comparison with the general population [15] and more mental health problems [11]. Most of these studies analysed the transplantations of one organ type, liver or kidney, which limits the practical application of the results due to a low number of patients. Follow-up and the management of immunosuppression are similar in many points
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