Hauch Holger, Kriwy Peter, Hahn Andreas, Dettmeyer Reinhard, Zimmer Klaus-Peter, Neubauer Bernd, Brill Sabine, Vaillant Vera, de Laffolie Jan, Schaefer Kristine, Tretiakowa Irina, Hach Michaela, Sibelius Ulf, Berthold Daniel
Palliative Care Team for Children, University Children's Hospital, Justus Liebig University Giessen, Giessen, Germany.
Department for Pediatrics, Hospital of Bad Hersfeld, Bad Hersfeld, Germany.
Front Pediatr. 2021 Mar 31;9:654531. doi: 10.3389/fped.2021.654531. eCollection 2021.
Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabilize the patient. In phase 2, terminal support is provided. Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated. A retrospective study was performed from 2014 to 2020. All home visits were analyzed with regard to the abovementioned symptoms, their causes, treatment and results. In total, 149 children were included (45.9% female, mean age 8.17 ± 7.67 years), and 126 patients were evaluated. GI symptoms were common in both phases. Vomiting was more common in phase 2 (59.3 vs. 27.1%; < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; ( < ). Constipation was present in 52.3% (phase 1) and 54.1% (phase 2). After treatment, the proportion of asymptomatic patients increased from 47.3 to 75.7% in phase 1 ( < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 ( < 0.05). Painful GI symptoms occur in both palliative care phases but are more common in phase 2. The severity and frequency can usually be controlled at home. The study limitations were the retrospective design and small number of patients, but the study had a representative population, good data quality and a unique perspective on the reality of outpatient pediatric palliative care in Germany.
患有危及生命疾病的儿童会出现胃肠道（GI）症状。自德国引入专门的姑息家庭护理（SPHC）以来，在家中护理这些儿童成为可能。在护理的第一阶段，目标是使患者病情稳定。在第二阶段，提供临终支持。对这两个阶段之间的差异进行了分析。评估了治疗的原因、方式/结果。进行了一项2014年至2020年的回顾性研究。对所有家访均就上述症状、其原因、治疗及结果进行了分析。总共纳入了149名儿童（女性占45.9%，平均年龄8.17±7.67岁），对126名患者进行了评估。胃肠道症状在两个阶段都很常见。呕吐在第二阶段更为常见（59.3%对27.1%；<0.001）。治疗后，第一阶段无症状儿童的比例从40.1%增至75.7%；（<）。便秘在第一阶段占52.3%，在第二阶段占54.1%。治疗后，第一阶段无症状患者的比例从47.3%增至75.7%（<0.001），第二阶段3级便秘从33.9%降至15%（<0.05）。痛苦的胃肠道症状在两个姑息治疗阶段均会出现，但在第二阶段更为常见。其严重程度和频率通常可在家中得到控制。该研究的局限性在于回顾性设计和患者数量较少，但该研究拥有具有代表性的人群、良好的数据质量以及对德国门诊儿科姑息治疗现实情况的独特视角。
