Jamorabo Daniel S, Belani Chandra P, Martin Edward W
1 Department of Medicine, University of Massachusetts Medical School , Worcester, Massachusetts.
J Palliat Med. 2015 Apr;18(4):350-7. doi: 10.1089/jpm.2014.0226. Epub 2014 Dec 18.
Pediatric patients with complex chronic conditions (CCC) can benefit from pediatric palliative and hospice care (PP/HC) services. PP/HC can be delivered in a variety of health care settings and for a multitude of conditions, but data on hospitalization patterns and on secondary illnesses in pediatric CCC patients remains scant.
The study objective was to describe mortality trends for Rhode Island resident children aged 0-17 years, along with the demographics, subtypes, sites of death, and comorbidities of those with CCC.
This was a retrospective cohort study using demographic, hospitalization, and clinical data from all Rhode Island Department of Health death certificates from 2000 to 2012.
Among the 1422 Rhode Island children aged 0-17 years old who died from 2000 to 2012, CCCs accounted for 27% (279/1049) of medically related deaths and 62% (145/233) of such deaths after infancy. CCC deaths were more likely at home (OR 5.202, 95% CI 2.984-9.203, p<0.001) and to have had a secondary cause of death documented (OR 3.032, 95% CI 2.259-4.067, p<0.001) than were other medically related deaths. Infants with CCCs were more likely to die in an inpatient setting (OR 5.141, 95% CI 2.718-10.026, p<0.001), whereas 1-17 year-olds with CCCs were more likely to die at home (OR 5.346, 95% CI 2.200-14.811, p<0.001) or in an emergency department (OR 3.281, 95% CI 1.363-8.721, p<0.040).
CCCs constitute a significant proportion of medically related pediatric deaths in Rhode Island and are associated with both secondary comorbidities and death at home. Specialized, multidisciplinary services are warranted and PP/HC is crucial for patient and family support.
患有复杂慢性病（CCC）的儿科患者可从儿科姑息治疗和临终关怀（PP/HC）服务中获益。PP/HC可在多种医疗环境中提供，适用于多种病症，但关于儿科CCC患者的住院模式和继发性疾病的数据仍然很少。
本研究的目的是描述罗德岛0至17岁居民儿童的死亡率趋势，以及患有CCC的儿童的人口统计学特征、亚型、死亡地点和合并症。
这是一项回顾性队列研究，使用了罗德岛卫生部2000年至2012年所有死亡证明中的人口统计学、住院和临床数据。
在2000年至2012年期间死亡的1422名罗德岛0至17岁儿童中，CCC占与医疗相关死亡的27%（279/1049），占婴儿期后此类死亡的62%（145/233）。与其他医疗相关死亡相比，CCC死亡更有可能在家中发生（比值比5.202，95%置信区间2.984-9.203，p<0.001），并且有记录的继发性死亡原因（比值比3.032，95%置信区间2.259-4.067，p<0.001）。患有CCC的婴儿更有可能在住院环境中死亡（比值比5.141，95%置信区间2.718-10.026，p<0.001），而1至17岁患有CCC的儿童更有可能在家中死亡（比值比5.346，95%置信区间2.200-14.811，p<0.001）或在急诊科死亡（比值比3.281，95%置信区间1.363-8.721，p<0.040）。
在罗德岛，CCC在与医疗相关的儿科死亡中占很大比例，并且与继发性合并症和在家中死亡有关。需要专门的多学科服务，PP/HC对于患者和家庭支持至关重要。
