1 CompassionNet, Lifetime Care, Rochester, New York.
2 Canisius College, Buffalo, New York.
J Palliat Med. 2019 May;22(5):517-521. doi: 10.1089/jpm.2018.0276. Epub 2019 Feb 7.
Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. A retrospective cohort analysis of administrative and electronic medical record data was employed. Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included ( = 224). Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Sixty-six (29%) of the children were <1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents ( = 89, 56%), whereas neuromuscular conditions ( = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability.
患有复杂慢性疾病（CCC）的儿童在家中死亡的频率越来越高，但关于基于社区的儿科姑息治疗经济可行性的研究数量有限。本研究的目的是：（1）描述参与基于社区的姑息治疗计划的死亡患者的特征，（2）评估与参与者特征和死亡地点相关的成本差异。采用回顾性队列分析方法对行政和电子病历数据进行分析。纳入 2008 年至 2015 年间在基于社区的儿科姑息治疗项目 CompassionNet 中死亡的儿童（ = 224）。从保险公司数据库中提取人口统计学数据、项目费用和已支付的索赔数据，从电子病历中提取临床数据。66 名（29%）儿童在死亡时年龄<1 岁；80 名（36%）儿童年龄为 1-9 岁，78 名（35%）儿童年龄为 10-22 岁。158 名儿童/青少年（ = 89，56%）最常见的主要 CCC 诊断为恶性肿瘤，而婴儿（ = 20，30%）最常见的诊断为神经肌肉疾病。婴儿在家中死亡的比例为 21%，1-9 岁儿童在家中死亡的比例为 48%，10-22 岁儿童在家中死亡的比例为 46%。儿科患者生命最后一年的总费用与死亡地点、恶性肿瘤诊断以及参与医疗补助计划显著相关。最大的估计差异是在家中死亡（$121,111）与在医院死亡（$200,050）之间的护理费用差异。多学科基于社区的儿科姑息治疗团队为实现在家中死亡提供了机会。与死亡地点相关的显著成本差异可能支持计划的复制和可持续性。
