Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study
Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study
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DOI：
10.1542/peds.2010-3225
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发表时间：
2011-06-01
期刊：
影响因子：
8
通讯作者：
Wolfe, Joanne
中科院分区：
文献类型：
--
作者：
Feudtner, Chris;Kang, Tammy I.;Wolfe, Joanne
目的：描述接受医院儿科姑息治疗（PPC）咨询的患者的人口统计学和临床特征以及结局。设计、设置和患者：前瞻性观察队列研究，所有患者均由2008年1月至3月在美国和加拿大的6个医院PPC团队提供服务。在3个月的入组间隔期间，有515例新患者（35.7%）或已确定患者（64.3%）接受了6个项目的治疗。其中，54.0%为男性，69.5%为白色，8.1%为西班牙裔。患者年龄范围为不到1个月（4.7%）至19岁或以上（15.5%）。60.4%的患者与父母同住，72.6%的患者有兄弟姐妹。主要的主要临床疾病是遗传/先天性（40.8%）、神经肌肉（39.2%）、癌症（19.8%）、呼吸系统（12.8%）和胃肠道（10.7%）。大多数患者长期使用某种形式的医疗技术，其中胃造口术管（48.5%）是最常见的。在咨询时，47.2%的患者有认知功能障碍; 30.9%的患者有疼痛。患者接受多种药物治疗（平均：9.1）。在12个月的随访期间，30.3%的队列死亡;从咨询到死亡的中位时间为107天。队列进入后30天内死亡的患者更有可能是婴儿，并有癌症或心血管疾病。结论：PPC团队目前服务于一个多样化的队列的儿童和年轻人的生命受到威胁的条件。相反，报告的经验，成人为导向的姑息治疗团队，大多数PPC患者都活着超过一年后，启动PPC。儿科2011;127：1094-1101
OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations.DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008.RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions.CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions.In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC. Pediatrics 2011;127:1094-1101