Caregiver Burden and Work Productivity Loss in Caregivers of Young Patients with Inflammatory Bowel Disease

Background: Inflammatory bowel disease (IBD) is associated with frequent hospitalizations, significant disability and impairment of quality of life. This can affect the physical, mental and overall wellbeing of not just the patients, but also the people caring for them. The aim of this study was to estimate the prevalence of burden among caregivers of young IBD patients, assess their work productivity impairment and identify the factors affecting caregiver burden. Methods: Design: This was a cross-sectional study conducted over a 16 month period at a tertiary care centre in north Kerala. Participants: 78 caregivers corresponding to 78 consecutive young IBD patients (aged 10- 24 years) were included. Two sets of questionnaires, the Zarit Burden Interview and the Work Productivity and Activity Impairment questionnaires tailored to suit IBD were used to assess burden and work productivity losses respectively. The study was approved by the institutional ethical committee. Results: A total of 78 caregivers, corresponding to 78 young IBD patients (aged 10- 24 years) were included in the study. 61 patients had Crohn’s disease and 17 patients had ulcerative colitis. Of the total number of caregivers, 47 caregivers (60.3%) experienced clinically significant caregiver burden. The mean ZBI score was 21.74± 10.3. The mean percentage work time missed (absenteeism) was 22.39%, the mean percentage impairment while working (presenteeism) was 40.0% and the mean percentage overall work impairment (loss of productivity) was 48.62%. Disease activity at the time of diagnosis (p=0.008 for Crohn’s p=0.002 for ulcerative colitis), absenteeism, presenteeism, work productivity loss and percentage activity impairment were significantly associated with caregiver burden Conclusion: Caregivers of young IBD patients experience significant burden and work productivity loss and this needs urgent attention to improve overall patient management.