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

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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.

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Data availability

All data sources described in this manuscript are available upon request.

Code availability

Not applicable.

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Acknowledgements

The authors wish to thank the families who participated in this study for contributing their time and information to this project. In addition, we would like to thank Michael Miller, our research assistant, for his support in collecting data and ensuring the project ran smoothly. This research was supported in part by the Bea Taplin Endowment Fund for Celiac Disease at Children's Hospital Colorado.

Funding

The authors received no external funding for this manuscript.

Author information

Authors and Affiliations

  1. Digestive Health Institute, Children’s Hospital Colorado, Aurora, CO, USA

    Monique M. Germone, Merlin Ariefdjohan, Marisa Stahl, Mary Shull, Pooja Mehta, Sadie Nagle & Edwin Liu

  2. Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

    Monique M. Germone & Merlin Ariefdjohan

  3. Department of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, CO, USA

    Monique M. Germone, Marisa Stahl, Mary Shull, Pooja Mehta & Edwin Liu

  4. Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

    Sally Tarbell

  5. Colorado Center for Celiac Disease, Children’s Hospital Colorado, Digestive Health Institute, Aurora, USA

    Monique M. Germone

Authors
  1. Monique M. Germone
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Contributions

MMG is the Principal Investigator and first-author for this study. She was assisted by mentors, Drs. Liu and Tarbell, on the overall study design and conceptualization. She was actively involved in the data collection, data analysis, data interpretation, and leadership of drafting and revising the manuscript. MA was actively involved in study coordination and led the data analysis and interpretation of the study. She was actively involved in drafting the manuscript and criticially reviewing revisions. MS was involved in the data collection, analysis, interpretation, and manuscript preparation process (drafting, revising). MSl was involved in the data collection, analysis, interpretation, and manuscript preparation process (drafting, revising). PM was involved in the data collection, analysis, interpretation, and manuscript preparation process (drafting, revising). SN was involved in the data collection, analysis, interpretation, and manuscript preparation process (drafting, revising). ST is a mentor and senior author for this study. She assisted with overall study design and conceptualization. She was involved in the data analysis, data interpretation, and drafting and revisions of the manuscript. EL is a mentor and senior author for this study. He assisted with overall study design and conceptualization. He was involved in the data collection, data analysis, data interpretation, and drafting and revisions of the manuscript. All authors have met authorship crtieria as recommended by the ICMJE.

Corresponding author

Correspondence to Monique M. Germone.

Ethics declarations

Conflict of interest

Edwin Liu is on the advisory board for Takeda Pharmaceuticals and I.M. Therapeutics. All other authors have no potential, perceived, or real conflicts of interest relevant to this article to disclose.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. This study was approved by the Colorado Multiple Institutional Review Board (COMIRB, Protocol No. 16-1206).

Consent to participate

Written informed consent was obtained from the parents or legal guardians, and written assent was obtained from child participants.

Consent for publication

All participants provided written consent or assent for publication of their de-identified data.

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Germone, M.M., Ariefdjohan, M., Stahl, M. et al. Family ties: the impact of celiac disease on children and caregivers. Qual Life Res 31, 2107–2118 (2022). https://doi.org/10.1007/s11136-021-03078-8

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