Qualité de vie à long terme après transplantation hépatique chez l’enfant

Roblin, E.; Audhuy, F.; Boillot, Olivier; Rivet, Christine; Lachaux, A.

doi:10.1016/j.arcped.2012.06.020

Cited by 4 publications

(4 citation statements)

References 18 publications

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“…Another strength is that we assessed for the first time heart transplanted children. Only two studies provide data from French population [ 5 , 14 ] with a kidney and liver transplant cohort. The transferability of findings of the non-French population is difficult because the QoL and satisfaction are closely dependent on cultural background and the health-care system.…”

Section: Discussionmentioning

confidence: 99%

“…Among the studies exploring the QoL of transplanted children, the findings are conflicting. In comparison with healthy populations, the QoL of transplanted paediatric patients could be lower [ 2 , 5 , 9 – 13 ], closer or higher [ 5 , 9 , 14 – 16 ], with children’s QoL often being lower and adolescents’ QoL being higher. Compared to other chronic conditions, the results are also discordant, with some studies showing better [ 17 , 19 ], similar [ 13 , 18 , 19 ] or lower QoL [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

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

Duvant

Fillat

Garaix

et al. 2021

Orphanet J Rare Dis

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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).

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Duvant

Fillat

Garaix

et al. 2021

Orphanet J Rare Dis

View full text Add to dashboard Cite

show abstract

“…Thus it is recommended to let an individual report on their own HRQoL, perhaps with the addition of a proxy version of the questionnaire [ 10 ]. Indeed, some instruments, both self and proxy-parent assessment, allow an individual to assess the level of HRQoL of another person, when the latter is not able to complete a self-questionnaire, using a proxy version [ 15 , 16 ]. Among the questionnaires that offer both a child and a parent version, the KIDSCREEN is the most widely used in the literature due to its good psychometric properties and its multilingualism, and it has been tested on 22 827 children with a response rate of 69% [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

“…A study using qualitative methods to explain these discrepancies showed that HRQoL score discrepancies between children and parents could be explained by children’s reasoning and response styles that tended to answer with extreme scores or based their response to a question on a single example [ 15 ]. Moreover, parents, especially mothers, underestimated their child’s HRQoL score [ 16 , 24 ].…”

Section: Introductionmentioning

confidence: 99%

Factors Associated with Discrepancy of Child-Adolescent/Parent Reported Quality of Life in the Era of COVID-19

Jeanbert

Baumann

Todorović

et al. 2022

IJERPH

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Billions of children/adolescents experienced unprecedented changes in their daily lives that impacted their health-related quality of life (HRQoL) during the first wave of the coronavirus disease 2019. The purpose of this study was to describe child-parent discrepancies in reporting on HRQoL and explore factors associated with such discrepancies at the end of the first lockdown in France. A cross-sectional study was conducted among French school-aged children from 8 to 18 years and their parents living in the Grand Est region in France during the first wave of the epidemic. The impact of individual, self-reported health status and environmental data on discrepant parent–child reports of HRQoL was assessed by multinomial multivariable logistic regression models. A total of 471 parent–child pairs were included. Among 50% of the discordant pairs, parents underestimated HRQoL more frequently than they overestimated it. Home location, social support score, children’s education level, parents’ education level, tensions and conflicts with neighbors reported by children, whether they had access to a garden, and parents’ professional activity were significantly associated with parental overestimation (adjustedOR from 2.08 to 11.61; p < 0.05). Factors associated with parental underestimation were children’s education level, SF12 score, home location, the child’s gender, parent’s level of education, the presence of noise in the residence reported by children, whether a household member was infected with COVID-19, whether they had access to a garden, and family structure (adjustedOR from 1.60 to 4.0; p < 0.05). This study revealed differences between child-reported and parent-reported HRQoL. The COVID-19 pandemic accentuated the discrepancies in observable dimensions and attenuated them in unobservable dimensions of HRQoL but did not impact the directional discrepancy; parents underestimated their child’s HRQoL more. These discrepancies appear to be explained by parent and child sociodemographic factors.

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The Adolescent Liver Transplant Patient

Kelly

Wray

2014

Clinics in Liver Disease

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Qualité de vie à long terme après transplantation hépatique chez l’enfant

Cited by 4 publications

References 18 publications

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

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

Factors Associated with Discrepancy of Child-Adolescent/Parent Reported Quality of Life in the Era of COVID-19

The Adolescent Liver Transplant Patient

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