Impact on caregivers of adult patients receiving parenteral support for short‐bowel syndrome with intestinal failure: A multinational, cross‐sectional survey

BACKGROUND: Patients with short‐bowel syndrome and intestinal failure (SBS‐IF) require parenteral support (PS) and may need long‐term home‐care support. This survey assessed the impact of care provision on adult caregivers of adult patients receiving PS for SBS‐IF. METHODS: An online, cross‐sectional survey of caregivers of adults with a self‐reported physician diagnosis of SBS‐IF was conducted in France, Germany, Italy, the UK, and USA. Impact on caregivers was evaluated using the 18‐item Caregiver Strain Index (CSI), the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP), and self‐reporting impact questionnaires. RESULTS: Caregivers (N = 121; aged 51 ± 13.7 years; 59% women) provided assistance for a mean of 9.9 ± 12.53 years; 77% were providing care 7 days per week. Patients (51 ± 16.4 years; 56% women) of caregivers were typically family members: spouse/partner (61%), adult son/daughter (19%), or parent (10%). Caregivers reported experiencing some strain (CSI score 4 ± 3.4). Among 71 of 73 employed caregivers, the WPAI:SHP assessment showed that caregivers missed 7% ± 12.7% of work hours in the preceding week and were present but not productive at work 37% ± 23.1% of the time; 28% of caregivers reported a reduced number of working hours because of caregiving. Many caregivers reported limitations in recreational activities (53%), and ≥30% had difficulty spending time with family and friends. Caregivers (87%) also reported worrying about the patient's health. CONCLUSIONS: Caregivers of adult patients with SBS‐IF experience negative daily personal impacts and loss of productivity arising from their caregiving responsibilities.