Hilberath Johannes, Mast Anna-Sophia, Scherer Simon, Fuchs Jörg, Schulte Johannes, Sturm Ekkehard, Warmann Steven, Slavetinsky Christoph
Paediatric Gastroenterology and Hepatology, University Children's Hospital Tübingen, University of Tübingen, Tübingen, Germany.
Department of Haematology and Oncology, University Children's Hospital Tübingen, University of Tübingen, Tübingen, Germany.
J Pediatr Gastroenterol Nutr. 2024 May;78(5):1171-1179. doi: 10.1002/jpn3.12158. Epub 2024 Mar 13.
Paediatric patients with intestinal failure (IF) are at risk for both gastrointestinal (GI) and systemic complications, thus depending on a functioning network of multidisciplinary care. Data on the clinical impact of coronavirus disease 2019 (COVID-19) or the pandemic-related restrictions are limited. We aimed to analyse the clinical course of COVID-19 in children with IF, and to evaluate the perceived impact of the COVID-19 pandemic on IF patients and their caregivers by analysing quality of life (QoL), health-related QoL (HRQoL) and health care.
Children with IF presenting at our intestinal rehabilitation centre were enrolled and interviewed about test-proven COVID-19 infection. A standardised questionnaire was offered to all caregivers of IF patients and to two control groups (children with inflammatory bowel disease and gastrointestinal healthy children).
Between December 2020 and November 2022, 25 out of 127 patients with IF contracted COVID-19. Forty-eight per cent had GI symptoms, 32% required additional intravenous fluids and 20% were hospitalized. Only 25% of vaccinated children showed signs of GI dysfunction, compared to 52% of unvaccinated children. Analysis of 93 questionnaires showed a negative impact on QoL and HRQoL (>66.7% and >27.8%, respectively). IF patients frequently experienced restrictions in health care, including appointments, services and supply of parenteral nutrition or medications. Caregiver burden increased significantly more often in caregivers of children with IF (p = 0.007).
Paediatric patients with IF contracting COVID-19 have an increased risk for GI dysfunction which may be alleviated by vaccination. Children and their caregivers were highly burdened by pandemic-related restrictions and reductions in health care provision.
患有肠衰竭（IF）的儿科患者面临胃肠道（GI）和全身并发症的风险，因此依赖于多学科护理的有效网络。关于2019冠状病毒病（COVID-19）或大流行相关限制的临床影响的数据有限。我们旨在分析IF患儿感染COVID-19的临床过程，并通过分析生活质量（QoL）、健康相关生活质量（HRQoL）和医疗保健情况，评估COVID-19大流行对IF患者及其照顾者的感知影响。
纳入在我们的肠道康复中心就诊的IF患儿，并就经检测证实的COVID-19感染情况进行访谈。向所有IF患者的照顾者以及两个对照组（炎症性肠病患儿和胃肠道健康儿童）发放标准化问卷。
在2020年12月至2022年11月期间，127例IF患者中有25例感染了COVID-19。48%的患者有胃肠道症状，32%的患者需要额外的静脉输液，20%的患者住院治疗。接种疫苗的儿童中只有25%出现胃肠道功能障碍的迹象，而未接种疫苗的儿童中这一比例为52%。对93份问卷的分析显示，COVID-19对生活质量和健康相关生活质量有负面影响（分别>66.7%和>27.8%）。IF患者在医疗保健方面经常遇到限制，包括预约、服务以及肠外营养或药物的供应。IF患儿照顾者的负担显著增加更为常见（p = 0.007）。
感染COVID-19的IF儿科患者出现胃肠道功能障碍的风险增加，接种疫苗可能会减轻这种情况。儿童及其照顾者因大流行相关限制和医疗保健服务减少而负担沉重。
