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 - 14/03/23
, Aline Cano, MD 2, Pascale De Lonlay, MD, PhD 3, Jean-Baptiste Arnoux, MD 3, Anais Brassier, MD 3, Manuel Schiff, MD, PhD 3, Samia Pichard, MD 4, Alexandre Fabre, MD 2, Celia Hoebeke, MD 2, Nathalie Guffon, MD 5, Alain Fouilhoux, MD 5, Pierre Broué, MD 6, Guy Touati, MD 6, Dries Dobbelaere, MD 7, Karine Mention, MD 7, Francois Labarthe, MD 8, Marine Tardieu, MD 8, Loïc De Parscau, MD, PhD 9, Francois Feillet, MD, PhD 10, Chrystèle Bonnemains, MD 10, Alice Kuster, MD 11, Philippe Labrune, MD, PhD 12, Magalie Barth, MD 13, Lena Damaj, MD 14, Delphine Lamireau, MD 15, Julie Berbis, MD, PhD 1, Pascal Auquier, MD, PhD 1, Brigitte Chabrol, MD, PhD 2Abstract |
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.
Clinical trial registration |
ClinicalTrials.gov: NCT02552784.
Le texte complet de cet article est disponible en PDF.Keywords : WHOQOL-BREF, caregivers, adolescents, linear mixed-effects models
Abbreviations : IEM, QoL, WHOQOL-BREF
Plan
| All phases of this study were supported by a grant from the French Ministry of Social Affairs and Health (Ministère des Affaires sociales et de la Santé, grant number: PHRC 2012 # 12-024-0236). The French Ministry of Social Affairs and Health had no role in the design, conduct of the study, the writing of the report, and the decision to submit the manuscript for publication. The authors declare no conflicts of interest. |
Vol 254
P. 39 - mars 2023 Retour au numéro
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