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. 2021 Aug 17;16(1):364.
doi: 10.1186/s13023-021-01987-y.

Quality of life of transplanted children and their parents: a cross-sectional study

Pauline Duvant #  1 , Magali Fillat #  1 , Florentine Garaix  1 , Bertrand Roquelaure  1 , Caroline Ovaert  2 , Virginie Fouilloux  2 , Michel Tsimaratos  1 , Pascal Auquier  3 , Alexandre Fabre  1 , Karine Baumstarck  4
Affiliations

Quality of life of transplanted children and their parents: a cross-sectional study

Pauline Duvant et al. Orphanet J Rare Dis. .

Abstract

Background: 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. 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.

Methods: This 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.

Results: Forty-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.

Conclusion: Transplanted 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 ).

Keywords: Children; Paediatric; Parents; Quality of life; Transplant organ.

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Conflict of interest statement

The authors declare that they have no competing interest.

Figures

Fig. 1
Fig. 1
Chart
Fig. 2
Fig. 2
Quality of life of transplanted children reported by their parents
Fig. 3
Fig. 3
Quality of life of parents of transplanted children. Comparisons of WhoQoL scores between the parents of transplanted children and IEMRD parents and French age-sex-crossed norms
See this image and copyright information in PMC

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