Thrane Susan E, Maurer Scott H, Cohen Susan M, May Carol, Sereika Susan M
1 College of Nursing, The Ohio State University , Columbus, Ohio.
2 Department of Hematology/Oncology, Palliative Care, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine , Pittsburgh, Pennsylvania.
J Palliat Med. 2017 Oct;20(10):1104-1111. doi: 10.1089/jpm.2017.0038. Epub 2017 Jun 6.
More children are living with serious illness. However, survival and complexity of illnesses have not been described.
To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral.
Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013.
The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral.
The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis.
Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.
越来越多的儿童患有严重疾病。然而，疾病的存活率和复杂性尚未得到描述。
描述转诊至姑息治疗后的疾病类型、转诊时间以及死亡时间；研究人口统计学和临床特征与患者存活率之间的关联；并研究转诊后平均每日疼痛是否减轻。
对2009年1月1日至2013年12月31日这五年研究期间转诊至一家大型儿童医院姑息治疗的所有2至16岁儿童进行回顾性病历审查。
主要结局是患者存活率，主要独立预测因素是疾病类型。采用Kaplan-Meier估计法估计转诊后的患者存活时间，采用Cox比例风险回归法基于性别、年龄、种族、宗教和疾病类型建立预测模型，采用配对t检验比较转诊前后的疼痛评估。
该队列由256名儿童组成。基于性别、年龄、种族或宗教，存活情况无显著差异（p≥0.05）；然而，存活情况因转诊诊断而异（χ=40.3，自由度=4，p<0.001），尤其是癌症。48名在转诊前后进行了三天疼痛评估的儿童在转诊后疼痛显著减轻（t(47)=1.816，单尾p<0.05），支持了我们的假设。
结果提供了关于转诊至姑息治疗的儿童疾病过程复杂性、转诊的疾病类型、存活率和疼痛水平的重要信息。结果反映出大多数儿童更早转诊至姑息治疗，并突出了医疗复杂性，尤其是对于患有先天性和遗传性诊断的儿童。
