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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.

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Author information

Affiliations

  • 1. Department of Epidemiology and Health Economics, AP-HM / EA 3279 CEReSS (Centre d'Etude et de Recherche sur les Services de Santé et la Qualité de vie), Aix-Marseille Univ, Marseille, France.
      Authors
    • Ouattara A 1
    • Resseguier N 1
    • Berbis J 1
    • Auquier P 1
    (4 authors)
  • 2. Reference Center of Inherited Metabolic Disorders, Timone Enfants Hospital, Marseille, France.
      Authors
    • Cano A 2
    • Fabre A 2
    • Hoebeke C 2
    • Chabrol B 2
    (4 authors)
  • 3. Reference Center of Inherited Metabolic Disorders, Necker Hospital, Paris, France.
      Authors
    • De Lonlay P 3
    • Arnoux JB 3
    • Brassier A 3
    • Schiff M 3
    (4 authors)
  • 4. Reference Center of Inherited Metabolic Disorders, Robert Debré Hospital, Paris, France.
      Authors
    • Pichard S 4
    (1 author)
  • 5. Reference Center of Inherited Metabolic Disorders, Femme Mère Enfant Hospital, Lyon, France.
      Authors
    • Guffon N 5
    • Fouilhoux A 5
    (2 authors)
    • Show all (15)

ORCIDs linked to this article

The Journal of Pediatrics, 17 Oct 2022, 254:39-47.e4
https://doi.org/10.1016/j.jpeds.2022.08.060 PMID: 36265570 

Abstract 

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.

Full text links 

Read article at publisher's site: https://doi.org/10.1016/j.jpeds.2022.08.060

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Funding 

Funders who supported this work.

Ministère des Affaires Sociales et de la Santé (1)