Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jul;31(7):2107-2118.
doi: 10.1007/s11136-021-03078-8. Epub 2022 Jan 4.

Family ties: the impact of celiac disease on children and caregivers

Monique M Germone  1   2   3   4 , Merlin Ariefdjohan  5   6 , Marisa Stahl  5   7 , Mary Shull  5   7 , Pooja Mehta  5   7 , Sadie Nagle  5 , Sally Tarbell  8 , Edwin Liu  5   7
Affiliations

Family ties: the impact of celiac disease on children and caregivers

Monique M Germone et al. Qual Life Res. 2022 Jul.

Abstract

Purpose: To evaluate the impact of celiac disease (CD) and the gluten-free diet (GFD) on the health-related quality of life (HRQoL) in children with CD in the United States using validated measures. We hypothesize that CD negatively impacts the child and caregivers' HRQoL.

Methods: Participants included children with a confirmed diagnosis of CD and their caregivers (n = 246) seen in a CD multidisciplinary clinic. Caregivers completed the Pediatric Quality of Life (PedsQL) parent-proxy scale to report on their child's HRQoL and the Family Impact Module (FIM), which assesses the impact of caring for a child with a chronic illness. Their children completed the age-appropriate PedsQL. PedsQL and FIM results were compared to published data for children with gastroenterological conditions and a healthy cohort using non-parametric tests.

Results: Children with CD reported significantly lower HRQoL than reports from healthy controls across all PedsQL domains (P < 0.001, Cohen d = 0.8), and lower compared to children with other organic gastrointestinal conditions in Social Functioning (P < 0.001, Cohen d = 0.5) and overall Psychosocial Functioning (P < 0.001, Cohen d = 0.3) domains. Results from the caregiver's report on their own HRQoL were significantly worse than that reported by historical controls in the domains of Communication (P < 0.001, Cohen d = 0.3) and Worry (P < 0.001, Cohen d = 0.8), yet similar on all other domains.

Conclusions: In our population, CD is associated with low HRQoL scores for both children and their caregivers. Screening children and families for HRQoL can identify patients and families in need of additional support in this higher-risk population.

Keywords: Celiac disease; Family impact; Gluten-free diet; Health-related quality of life.

PubMed Disclaimer

References

    1. Singh, P., Arora, A., Strand, T. A., Leffler, D. A., Catassi, C., Green, P. H., Kelly, C. P., Ahuja, V., & Makharia, G. K. (2018). Global prevalence of celiac disease: Systematic review and meta-analysis. Clinical Gastroenterology and Hepatology, 16(6), 823-836.e822. - DOI
    1. Liu, E., Dong, F., Barón, A. E., Taki, I., Norris, J. M., Frohnert, B. I., Hoffenberg, E. J., & Rewers, M. (2017). High incidence of celiac disease in a long-term study of adolescents with susceptibility genotypes. Gastroenterology, 152(6), 1329-1336.e1321. - DOI
    1. Barker, J. M., & Liu, E. (2008). Celiac disease: Pathophysiology, clinical manifestations, and associated autoimmune conditions. Advances in Pediatrics, 55, 349–365. - DOI
    1. Lebwohl, B., Sanders, D. S., & Green, P. H. R. (2018). Coeliac disease. Lancet, 391(10115), 70–81. - DOI
    1. Rodríguez Almagro, J., Rodríguez Almagro, D., Solano Ruiz, C., Siles González, J., & Hernández Martínez, A. (2018). The experience of living with a gluten-free diet: An integrative review. Gastroenterology Nursing, 41(3), 189–200. - DOI

LinkOut - more resources