BACKGROUND: Home Parenteral Nutrition (HPN) is the recommended treatment in chronic intestinal failure (CIF) patients. HPN is associated with a worsening of patients' quality of life and has a dramatic impact on personal and familial daily life. Little is known about the informal caregiver burden of patients receiving HPN. AIM: To assess informal caregiver burden and the factors associated with moderate-to-severe caregiver burden in patients treated with HPN. METHODS: Informal caregivers of consecutive patients treated with HPN in a French nutritional referral center were invited to participate in a survey between January and June 2021. They had to fill out an anonymous standardized self-questionnaire evaluating burden by the Zarit Burden Interview (ZBI), and depression and anxiety symptoms by HADS score since HPN introduction. RESULTS: Among the 87 HPN patients having informal caregivers, 53 (61%) completed the questionnaire. Thirty (57%) informal caregivers were women. The caregiver's median age was 62 (IQR, 21.0) years. Twelve (22%) expressed moderate-to-severe burden (ZBI score 41-88). In multivariate analysis, the caregiver's male gender (OR: 16.45, CI95%, [2.30 - 238.75]; p value=0.014) and the number of simultaneous infusions per day > 1 (OR: 9.92 [1.35 - 121.60]; p value = 0.0038) were associated with a moderate-to-severe burden. Twenty caregivers reported anxious and depressive symptoms with an elevated HADS. CONCLUSION: In this prospective survey, a minority of informal caregivers of CIF patients treated with HPN expressed moderate-to-severe burden. The caregiver's male gender was associated with a higher burden in CIF patients. This article is protected by copyright. All rights reserved.
Male Gender Is Associated with Informal Caregiver Burden in Chronic Intestinal Failure Patients Treated with Home Parenteral Nutrition