For a study, researchers sought to assess the long-term development of job productivity loss and activity impairment in carers of children with IBD (IBD). They also looked at the links between these impairments, IBD-related variables, carers’ health-related quality of life (HRQOL), and the indirect costs of work absence.

Children with newly diagnosed IBD have been included prospectively in the Pediatric Inflammatory Bowel Disease Network for Safety, Efficacy, Treatment, and Quality Improvement of Care research since January 2017. The Work Productivity and Activity Impairment for Caregivers questionnaire and the European Quality of Life Five Dimension Five Level questionnaire was used to assess pediatric-onset IBD’s impact on caregivers’ socioeconomic functioning (work and daily activities) and HRQOL at diagnosis, 3 and 12 months of age. To examine outcomes longitudinally, generalized estimating equation models were used, which were adjusted for IBD type, disease activity, and the child’s age at diagnosis.

Up to July 2021, 491 IBD children were eligible for an examination of caregivers’ Work Productivity and Activity Impairment questionnaires. At the time of 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 reduced considerably over time and were related to disease activity but not to IBD type or kid age. The HRQOL of caregivers was linked to both deficits. During the first year after diagnosis, the costs of work absence were at least €6,272 ($7,276) per patient.

Caregivers of children with IBD have substantial challenges in their employment and daily activities, particularly around the time of diagnosis. Following that, the influence declines and is linked to disease activity and carers’ HRQOL. Absence from work incurs significant secondary expenses.