An international survey of clinicians’ experience caring for patients on home parenteral nutrition for chronic intestinal failure during the COVID‐19 pandemic

PJ, Allan; Pironi, L; F, Joly; S, Lal

BACKGROUND AND AIMS: This survey of centres caring for patients on home parenteral nutrition (HPN) was conducted to assess the impact of the COVID‐19 crisis on the management of these patients in terms of provision of care, monitoring, regular follow‐up and any changes to service infrastructure. METHODS: A survey was devised and publically published on the REDCap database management system with individual centres responding to a public link. RESULTS: 78 adult and paediatric centres worldwide contributed to the survey, representing at least 3500 patients’ experience. Centres (n/78 unless otherwise specified, %) reported infrastructure maintenance for PN bag deliveries to patients (60, 76.92%) or delivery of ancillary items (dressing packs, gloves, bungs) (57, 73.08%) home delivery and HPN administration (65, 83.33%) but homecare nurse shortages (25, 32.05%). Follow up of routine HPN patients changed to either all telemed or mixed with emergency clinic review (70, 89.74%). In 26 centres (33.33%), new discharges on HPN for benign conditions were reduced or stopped. Based on clinical history the centres reported psychological distress for patients (52, 66.67%) with anxiety, worry, concern and apprehension reported most frequently (37/52, 71.15%) but also fear (10/52, 19.23%), depression (5/52, 9.62%) and issues related to isolation/confinement (12/52, 23.08%). CONCLUSIONS: The COVID‐19 pandemic was reported by clinicians to have had a far reaching adverse impact on patients on home parenteral nutrition, especially their safety in terms of provision of PPE, PN bags, available nursing staff and psychological well‐being. Healthcare systems responded to the challenge presented with new ways of working. This article is protected by copyright. All rights reserved