Hizanu Mihaela, Duceac Mădălina, Duceac Letiția Doina
Lumina Association - Bacau Palliative Care Center, Bacau, Romania.
Faculty of Medicine and Pharmacy, Dunarea de Jos University of Galati, Galati, Romania.
J Med Life. 2024 Sep;17(9):848-855. doi: 10.25122/jml-2024-0315.
Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases, congenital brain malformations, neurodegenerative disorders, and acquired brain injury. Enteral feeding, given directly into the gastrointestinal tract, is often necessary. A retrospective study conducted between 2018 and 2023 at the Lumina Association - Bacau Palliative Care Center analyzed data from 604 children with progressive neurological disorders out of 952 patients. These children, with an average age of 9.03 years, required enteral feeding due to swallowing disorders (48%), congenital malformations (29%), and malnutrition (23%). Feeding was performed mainly through a nasogastric tube (97.52%) and in 2.48% of cases through a gastrostomy. During this period, 4.14% of patients died from the underlying disease. The study highlights the benefits and complications of enteral feeding in these children. Although enteral feeding has been shown to be effective in maintaining nutritional status and avoiding dehydration, challenges have been identified, including digestive complications and the risk of infections in the context of palliative care.
鉴于患有神经系统疾病的儿童症状无法控制且伴有残疾，为他们提供姑息治疗对于改善其生活质量及其家庭的生活质量至关重要。这些疾病包括遗传疾病、先天性脑畸形、神经退行性疾病和后天性脑损伤。通常需要通过直接将营养物质输送到胃肠道的肠内喂养方式。2018年至2023年期间，在卢米纳协会 - 巴克乌姑息治疗中心进行的一项回顾性研究分析了952名患者中604名患有进行性神经系统疾病儿童的数据。这些儿童平均年龄为9.03岁，因吞咽障碍（48%）、先天性畸形（29%）和营养不良（23%）而需要肠内喂养。喂养主要通过鼻胃管进行（97.52%），2.48%的病例通过胃造口术进行。在此期间，4.14%的患者死于基础疾病。该研究强调了肠内喂养对这些儿童的益处和并发症。尽管肠内喂养已被证明在维持营养状况和避免脱水方面有效，但也发现了一些挑战，包括消化并发症以及姑息治疗背景下的感染风险。
