1 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Clinic for Paediatrics, Department of Oncology/Haematology, Berlin, Germany .
2 Paediatric Palliative Care Centre, Children's and Adolescent's Hospital, Datteln, and Department of Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University , Faculty of Health, School of Medicine, Germany .
J Palliat Med. 2018 Feb;21(2):169-176. doi: 10.1089/jpm.2017.0020. Epub 2018 Jan 3.
The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed.
This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups.
DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs.
The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care.
A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.
患有危及生命和生命有限疾病的儿童数量不断增加，这需要在医院中采用个体化方法和额外的支持性护理。然而，这些患者的特征及其在儿科三级医院环境中的流行程度尚未得到系统分析。
本研究旨在确定接受有可行治疗方法的危及生命疾病治疗和不可避免的过早死亡的生命有限疾病（LLD）治疗的住院儿童比例，而不是接受急性或慢性疾病治疗的比例；此外，还比较了这些亚组中的患者特征、临床特征和症状。
设计/设置/受试者：通过对负责的医疗团队进行标准化访谈，在一家大型儿科三级护理中心对 208 名患者进行了横断面调查。患者亚组定义为患有急性、慢性、危及生命或 LLD 的患者。
对患者亚组的比较显示出明显的差异，并表明近一半的住院患者患有危及生命的疾病（20%）或 LLD（27%），其中罕见疾病的比例很高（82%）。他们在所有临床特征参数中都经历了高症状负担，包括对药物和护理的高需求。
相当一部分儿科住院患者患有危及生命或 LLD，以及罕见疾病，这表明症状负担很重，需要额外的护理。结果表明，在三级护理中心为处于危急和终末期的患者实施儿科姑息治疗结构具有很大的需求。
