High Impact of Pediatric Inflammatory Bowel Disease on Caregivers’ Work Productivity and Daily Activities: An International Prospective Study

Renz C.W. Klomberg*, Martine A. Aardoom, the PIBD-SET Quality consortium, Polychronis Kemos, Dimitris Rizopoulos, Frank M. Ruemmele, Nicholas M. Croft, Lissy de Ridder, Mattias Neyt, Dan Turner, Gili Focht, Janneke Samsom, Gigi Veereman, Sibylle Koletzko, Annecarin Brückner, Arie Levine, Richard Russell, Anne Griffiths, Marina Aloi, Thomas WaltersMichael Walker

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Objectives: To evaluate the longitudinal evolution of work productivity loss and activity impairment in caregivers of children with inflammatory bowel disease (IBD). We also evaluated the associations between these impairments, IBD-related factors, and caregivers’ health-related quality of life (HRQOL) and estimated the indirect costs related to work absenteeism. Study design: Since January 2017, children with newly diagnosed IBD were enrolled prospectively in the Pediatric Inflammatory Bowel Disease Network for Safety, Efficacy, Treatment and Quality improvement of care study. The impact of pediatric-onset IBD on caregivers' socioeconomic functioning (work and daily activities) and HRQOL was assessed using the Work Productivity and Activity Impairment for caregivers questionnaire and the European Quality of Life Five Dimension Five Level questionnaire, at diagnosis and 3 and 12 months of age. Generalized estimating equation models were applied to evaluate outcomes longitudinally, adjusted for IBD type, disease activity, and child's age at diagnosis. Results: Up to July 2021, 491 children with IBD were eligible for analysis of caregivers' Work Productivity and Activity Impairment questionnaire. At diagnosis, the mean caregivers' employment rate was 78.4%; the adjusted mean work productivity loss was 44.6% (95% CI, 40.2%-49.0%), and the adjusted mean activity impairment was 34.3% (95% CI, 30.8%-37.7%). Work productivity loss and activity impairment significantly decreased over time and were associated with disease activity, but not with IBD type or child's age. Caregivers' HRQOL was associated with both impairments. Costs related to work absenteeism were at least €6272 ($7276) per patient during the first year after diagnosis. Conclusions: Caregivers of children with IBD experience significant impairments in work and daily activities, especially at diagnosis. The impact decreases thereafter and is associated with disease activity and caregivers’ HRQOL. Work absenteeism results in high indirect costs.

Original languageEnglish
Pages (from-to)95-102.e4
JournalJournal of Pediatrics
Volume246
Early online date13 Apr 2022
DOIs
Publication statusPublished - 1 Jul 2022

Bibliographical note

Funding Information:
The PIBD-SETQuality inception cohort study is supported by the European Union's Horizon 2020 Research and Innovation Program grant (grant agreement number 668023 [to N.C. and L. d.R.]). The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. L.d.R. reported grants from ZonMW, ECCO, and Pfizer, and collaboration (such as involved in industry sponsored studies, investigator initiated study, consultancy) with Celltrion, Abbvie, Lilly, Takeda, and Pfizer. N.C. reported collaboration with Eli Lilly, Abbvie, Jansen, Takeda, and Pfizer. The other authors declare no conflicts of interest.

Funding Information:
The PIBD-SETQuality inception cohort study is supported by the European Union's Horizon 2020 Research and Innovation Program grant (grant agreement number 668023 [to N.C. and L. d.R.]). The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. L.d.R. reported grants from ZonMW, ECCO, and Pfizer, and collaboration (such as involved in industry sponsored studies, investigator initiated study, consultancy) with Celltrion, Abbvie, Lilly, Takeda, and Pfizer. N.C. reported collaboration with Eli Lilly, Abbvie, Jansen, Takeda, and Pfizer. The other authors declare no conflicts of interest.

Publisher Copyright:
© 2022

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