Titre :

Individual and family determinants for quality of life in parents of children with inborn errors of metabolism requiring a restricted diet: a multilevel analysis approach.

Auteur(s) :

Ouattara, A. [Auteur]
Resseguier, N. [Auteur]
Cano, A. [Auteur]
De Lonlay, P. [Auteur]
Arnoux, J. B. [Auteur]
Brassier, A. [Auteur]
Schiff, M. [Auteur]
Pichard, S. [Auteur]
Fabre, A. [Auteur]
Hoebeke, C. [Auteur]
Guffon, N. [Auteur]
Fouilhoux, A. [Auteur]
Broué, P. [Auteur]
Touati, G. [Auteur]
Dobbelaere, Dries [Auteur]
Maladies Rares du Développement : Génétique, Régulation et Protéomique (RADEME) - ULR 7364
Mention, Karine [Auteur]
Maladies RAres du DEveloppement embryonnaire et du MEtabolisme : du Phénotype au Génotype et à la Fonction - ULR 7364 [RADEME]
Labarthe, F. [Auteur]
Tardieu, M. [Auteur]
De Parscau, L. [Auteur]
Feillet, F. [Auteur]
Bonnemains, C. [Auteur]
Kuster, A. [Auteur]
Labrune, P. [Auteur]
Barth, M. [Auteur]
Damaj, L. [Auteur]
Lamireau, D. [Auteur]
Berbis, J. [Auteur]
Auquier, P. [Auteur]
Chabrol, B. [Auteur]

Titre de la revue :

J Pediatr

Nom court de la revue :

J Pediatr

Numéro :

254

Pagination :

39-47

Date de publication :

2022-10-21

ISSN :

1097-6833

Discipline(s) HAL :

Sciences du Vivant [q-bio]

Résumé en anglais : [en]

Objective The objective of this study was to compare the quality of life (QoL) for parents of children with inborn errors of metabolism (IEMs) requiring a restricted diet with French population norms and investigate ...
Lire la suite >Objective The objective of this study was to compare the quality of life (QoL) for parents of children with inborn errors of metabolism (IEMs) requiring a restricted diet with French population norms and investigate parental QoL determinants. Study design This cross-sectional study included mothers and/or fathers of children < 18 years of age affected by IEMs requiring a restricted diet (except phenylketonuria) from January 2015 to December 2017. Parents’ QoL was assessed using the World Health Organization Quality of Life BREF questionnaire and compared with age- and sex-matched reference values from the French general population. Linear mixed models were used to examine the effects of demographic, socioeconomic, disease-related, and psychocognitive factors on parental QoL, according to a 2-level regression model considering individuals (parents) nested within families. Results Of the 1156 parents invited to participate, 785 (68%) were included. Compared with the general population, parents of children with IEMs requiring a restricted diet reported a lower QoL in physical and social relationship domains but a higher QoL in the psychological domain. In the multivariate analysis, characteristics associated with poorer parental QoL included both parent-related factors (being a father, older age, more educated parent, nonworking parent, greater anxiety, seeking more social support, and using less positive thinking and problem-solving coping strategies) and family-related factors (disease complications, increased number of hospital medical providers, child's younger age, single-parent family, and lower family material wealth). Conclusion Parents of children with IEMs requiring a restricted diet reported poorer QoL in physical and social relationship domains than population norms. Psychocognitive factors, beyond disease-specific and family-related characteristics, were the most important determinants influencing parental QoL and may represent essential aspects for interventions.Lire moins >

Langue :

Anglais

Audience :

Internationale

Vulgarisation :

Non

Établissement(s) :

Université de Lille
CHU Lille

Collections :

• Maladies Rares du Développement : Génétique, Régulation et Protéomique (RADEME) - ULR 7364

Date de dépôt :

2024-06-26T21:18:28Z
2024-10-22T13:23:54Z