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

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. 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. 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. 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 ).

Duvant P ，Fillat M ，Garaix F ，Roquelaure B ，Ovaert C ，Fouilloux V ，Tsimaratos M ，Auquier P ，Fabre A ，Baumstarck K ... -  《Orphanet Journal of Rare Diseases》

Quality of life of chronically ill children and adolescents: a cross-sectional study.

Perreard P ，Castets S ，Aouchiche K ，Bernoux D ，Bruno D ，Cailliez M ，Clave S ，Coste ME ，De Leusse C ，Duvant P ，Garaix F ，Gauche L ，Marquant E ，Roman C ，Roquelaure B ，Rouvière CR ，Vergier J ，Tsimaratos M ，Berbis J ，Fabre A ，Reynaud R ... -  《-》

Assessment of quality of life of the children and parents affected by inborn errors of metabolism with restricted diet: preliminary results of a cross-sectional study.

Fabre A ，Baumstarck K ，Cano A ，Loundou A ，Berbis J ，Chabrol B ，Auquier P ... -  《Health and Quality of Life Outcomes》

Quality of life in minor siblings of childhood leukemia survivors, long-term after diagnosis: A LEA study (for Leucemies de l'Enfant et de l'Adolescent--childhood and adolescent leukemia).

The objectives of this study are to assess the quality of life (QoL) of siblings of childhood leukemia survivors in comparison with population controls and to identify determinants of sibling's QoL. The nearest-aged siblings (8-17 years) of minor CLS participating in the French LEA cohort (Childhood and Adolescent Leukemia), at the Marseilles center, were included. Siblings' QoL was self-reported using the 'Vécu et Santé Perçue de l'Adolescent et l'enfant' questionnaire. Results were compared with those obtained for age-matched and sex-matched French controls subjects. Characteristics likely to be associated with siblings' QoL (sibling's and survivor's sociodemographic and health-related and cancer-related characteristics) were explored through multivariate analysis. Fifty-one siblings participated (mean age 12.7 ± 2.8 years, mean follow-up duration from diagnosis to evaluation 8.8 ± 2.5 years). They reported a significantly higher perception of QoL compared with the general population regarding psychological domains, while reporting a lower perception regarding social domains. In multivariate analysis, older age at diagnosis for both siblings and survivors was risk factor for impaired psychological QoL. An elevated leukemia burden index was linked with lower scores in self-esteem dimension, whereas having at least one sequelae for the survivor was linked with better scores in psychological well-being dimension. Low or middle affluence and older sibling's age at diagnosis were risk factors for impaired social QoL. Maximal R(2) was 30%. Minor siblings of CLS reported a relatively good QoL, particularly in psychological domains. Given the low proportion of QoL variability explained, other contributing factors (e.g., family functioning) must be explored.

Berbis J ，Oudin C ，Alessandrini M ，Vercasson C ，Barlogis V ，Chambost H ，Michel G ，Auquier P ... -  《-》

Short and long-term quality of life after reconstruction of bladder exstrophy in infancy: preliminary results of the QUALEX (QUAlity of Life of bladder EXstrophy) study.

The aim of the study was to assess quality of life (QOL) of patients born with bladder exstrophy (BE) and reconstructed during early childhood in 7 French university hospitals (QUALEX study: QUAlity of Life of bladder EXstrophy). Patients from 6 to 42 years old answered self-administered Short-Form 36 (SF-36), VSP-A (Vécu et Santé Perçue de l'Adolescent), VSP-AE (Vécu et Santé Perçue de l'Enfant), AUQUIE (AUto-QUestionnaire Imagé de l'Enfant), and general questionnaires about functional and socioeconomic data. Dimension scores were compared between adults and adolescents using SF-36 and adolescents and children using VSP-AE. Scores were also compared to the general French population. Among the 134 eligible patients, 36 adults, 18 adolescents, and 17 children answered the questionnaire. There was no difference between responders and nonresponders in reconstruction criteria. Continence was achieved in 77% of adults, 65% of adolescents, and 12% of children. Adolescent QOL was globally superior to adults and children. Adult QOL was globally lower than the general population except on the physical dimension. Children's QOL was also globally lower than the general population except for relations with family and school work. Adolescents' scores on SF-36 were superior to the general population but lower on half of the dimensions with VSP-AE. Patients presenting with reconstructed BE have impaired QOL, and functional results seem to be the most likely predictive factor of health-related QOL score.

Jochault-Ritz S ，Mercier M ，Aubert D 《-》