An International Survey of Clinicians' Experience Caring for Patients Receiving Home Parenteral Nutrition for Chronic Intestinal Failure During the COVID-19 Pandemic.

Abstract

BackgroundThis survey of centers caring for patients receiving home parenteral nutrition (HPN) was conducted to assess the impact of the coronavirus disease 2019 (COVID‐19) crisis on the management of these patients regarding provision of care, monitoring, regular follow‐up, and any changes to service infrastructure.MethodsA survey was devised and publically published on the Research Electronic Data Capture database management system, with individual centers responding to a public link.ResultsA total of 78 adult and pediatric centers worldwide contributed to the survey, representing ≥3500 patients’ experiences. Centers reported infrastructure maintenance for Parenteral Nutrition (PN) bag deliveries to patients (60, 76.92%) or delivery of ancillary items (57, 73.08%), home delivery and HPN administration (65, 83.33%), and home care nurse shortages (25, 32.05%). Routine follow‐up of HPN patients changed to either all telemed or mixed with emergency clinic review (70, 89.74%). In 26 centers (33.33%), HPN for newly discharged patients with benign conditions was reduced or stopped. Based on clinical history, the centers reported psychological distress for patients (52, 66.67%), with anxiety, worry, concern, and apprehension reported most frequently (37 of 52, 71.15%) but also fear (10 of 52, 19.23%), depression (5 of 52, 9.62%), and issues related to isolation/confinement (12 of 52, 23.08%).ConclusionsThe COVID‐19 pandemic was reported by clinicians to have had a far‐reaching adverse impact on patients receiving HPN, especially their safety in terms of provision of personal protective equipment, PN bags, available nursing staff, and psychological well‐being. Healthcare systems responded to the challenge and presented new ways of working.