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Changes in health-related quality of life over a 1-year follow-up period in children with inflammatory bowel disease

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Abstract

Purpose

Little is known about disease-specific health-related quality-of-life (HRQoL) changes over time in paediatric patients with inflammatory bowel disease (IBD), and about their associations with baseline medical characteristics.

Methods

In this study, 153 paediatric patients with IBD from the multicentre prospective Swiss IBD cohort study were included at baseline. Of these, 90 patients were analysed at a 1-year follow-up. Medical data were extracted from hospital records, while HRQoL data were measured using the standardized, self-report disease-specific IMPACT-III questionnaire.

Results

The IBD diagnosis of the included children was made an average of 2.0 years before their baseline assessment. Over the 1-year follow-up period, a significant increase in overall HRQoL and in the HRQoL domain ‘physical functioning’ was evident. On multivariate analysis, overall HRQoL changes over time were predicted by baseline HRQoL, baseline disease activity, and disease activity changes over time. HRQoL improvements were significantly associated with decreases in physician-assessed disease activity. Children reporting a low baseline HRQoL and children with inactive or mildly-active disease experienced greater improvements.

Conclusions

Children with more severe baseline disease activity had the greatest risk for HRQoL deterioration over the 1-year follow-up period. However, among possible factors that might influence HRQoL changes over time, the child’s medical characteristics explained only a small proportion of their variability in our sample. We, therefore, recommend that researchers and clinicians focus on factors that are not incorporated within the multidimensional HRQoL concept if they seek to gain better insights into factors that influence HRQoL changes over time in children with IBD.

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Acknowledgements

We thank all the children and parents who participated in this study. A special thank goes to Luciano Molinari, PhD, for many discussions about the topic of this study.

Funding

This work was supported by a research grant from the Swiss National Science Foundation [Grant 3CSC0_13427 to the Swiss IBD Cohort].

Author information

Authors and Affiliations

  1. Department of Psychosomatics and Psychiatry, University Children’s Hospital, Zurich, Switzerland

    Helene Werner & Markus A. Landolt

  2. Divison of Gastroenterology and Nutrition, University Children’s Hospital, Zurich, Switzerland

    Patrick Buehr, Rebekka Koller & Christian P. Braegger

  3. Division of Gastroenterology, University Children’s Hospital, Lausanne, Switzerland

    Andreas Nydegger

  4. Division of Gastroenterology, Children’s Hospital, Lucerne, Switzerland

    Johannes Spalinger

  5. Division of Gastroenterology, Children’s Hospital, Winterthur, Switzerland

    Klaas Heyland

  6. Division of Gastroenterology, University Children’s Hospital, Berne, Switzerland

    Susanne Schibli

  7. Children’s Research Center, University Children’s Hospital, Steinwiesstrasse 75, 8032, Zurich, Switzerland

    Markus A. Landolt & Christian P. Braegger

  8. Department of Child and Adolescent Health Psychology, Institute of Psychology, University of Zurich, Zurich, Switzerland

    Markus A. Landolt

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  1. Helene Werner
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  2. Markus A. Landolt
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  9. Christian P. Braegger
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Consortia

The Swiss IBD Cohort Study Group

Corresponding author

Correspondence to Christian P. Braegger.

Ethics declarations

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.

Conflict of interest

The authors declare that they have no conflict of interest.

Informed consent

Informed consent was obtained from all parents of the children included in this study.

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Werner, H., Landolt, M.A., Buehr, P. et al. Changes in health-related quality of life over a 1-year follow-up period in children with inflammatory bowel disease. Qual Life Res 26, 1617–1626 (2017). https://doi.org/10.1007/s11136-017-1513-9

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  • DOI: https://doi.org/10.1007/s11136-017-1513-9

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