Abstract
Context: 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.Objectives: Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated.Methods: 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.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%; p < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; (p < 0.001). 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 (p < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 (p < 0.05).Conclusion: 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.
Highlights
Children, adolescents and young adults with life-limiting diseases suffer from various symptoms at the end of their lives, which can be painful and impair their quality of life [1]
Since 2007, patients with statutory health insurance in Germany have had a legal right to specialized palliative home care (SPHC) [3]
Many SPHC teams have been established for the care of children and young people [4]
Summary
Adolescents and young adults with life-limiting diseases suffer from various symptoms at the end of their lives, which can be painful and impair their quality of life [1]. Due to changes in the palliative care landscape in Germany, the conditions needed for the better recognition and treatment of these symptoms at home are emerging. 1.) In Germany, progress has been made in the development of infrastructure that has led to improvements in the care of pediatric patients who need palliative care [2]. In contrast to SPHC for adults, which mainly treats older or very elderly patients with advanced cancer, SPHC teams for children and adolescents see a wide range of different and often rare diseases [2, 5]. In addition to crisis intervention, SPHC has an element of care for the patients during their lives (= phase 1 of the SPHC “life care”)
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
