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首页> 外文期刊>Pediatrics: Official Publication of the American Academy of Pediatrics >Pediatric palliative care patients: a prospective multicenter cohort study.
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Pediatric palliative care patients: a prospective multicenter cohort study.

机译：小儿姑息治疗患者：一项前瞻性多中心队列研究。

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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.
机译：目的：描述接受医院小儿姑息治疗（PPC）咨询的患者的人口统计学和临床​​特征及结局。设计，地点和患者：从2008年1月至3月，在美国和加拿大的6家医院PPC团队对所有患者进行的前瞻性观察队列研究。结果：有515例新患者（占35.7％）或已建立（64.3％）在3个月的入组时间间隔内从6个程序中接受护理的患者。其中，男性占54.0％，白人占69.5％，西班牙裔占8.1％。患者年龄范围从不到一个月（4.7％）到19岁或更大（15.5％）。在这些患者中，有60.4％与父母同住，有72.6％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％），呼吸道（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，其中最常见的是胃造口管（48.5％）。接受咨询时，47.2％的患者有认知障碍。 30.9％的人经历了疼痛。患者正在接受许多药物治疗（平均9.1）。在12个月的随访期间，有30.3％的队列死亡。从咨询到死亡的平均时间为107天。在队列进入后30天内死亡的患者更可能是婴儿，患有癌症或心血管疾病。结论：PPC团队目前为各种威胁生命的儿童和年轻人提供服务。与报道的以成人为导向的姑息治疗小组的经验相反，大多数PPC患者在开始PPC后仍存活了一年以上。

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