Boss Renee D, Williams Erin P, Henderson Carrie M, Seltzer Rebecca R, Shapiro Miriam C, Hahn Emily, Hutton Nancy
Johns Hopkins University School of Medicine, Baltimore, Maryland;
Berman Institute of Bioethics, Baltimore, Maryland.
Hosp Pediatr. 2017 Jul 27. doi: 10.1542/hpeds.2016-0185.
The past 2 decades have seen an expanding pediatric population that is chronically critically ill: children with repeated and prolonged hospitalizations and ongoing dependence on technologies to sustain vital functions. Although illness complexity prompts many hospitalizations, our goal with this study was to explore modifiable patient, family, and health system contributions to excess hospital days for children with chronic critical illness (CCI).
Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes.
All stakeholders agreed that homelike settings are ideal care sites for children with CCI, yet in every region these children experience prolonged hospitalizations. The perceived causes of excess hospital days are (1) inadequate communication and coordination within health care teams and between clinicians and families, (2) widespread gaps in qualified pediatric home health services and durable medical equipment providers, (3) inconsistent parent support, and (4) policies that limit pediatric service eligibility, state-supported case management, and nonhospital care sites.
Despite an expanding pediatric population with CCI, we lack an intentional care model to minimize their hospitalizations. In this study, we generate several hypotheses for exploring the potential impact of expanded access to home nursing, robust care coordination, and family and clinician support to reduce hospital days for this population of high health care utilizers.
在过去20年里，患有慢性危重症的儿科患者群体不断扩大，这些儿童反复住院且住院时间延长，持续依赖维持生命功能的技术设备。尽管疾病的复杂性导致多次住院，但我们开展这项研究的目的是探讨可改变的患者、家庭和卫生系统因素对慢性危重症（CCI）儿童住院天数过多的影响。
对51名以CCI专业知识著称的利益相关者进行了半结构化访谈。利益相关者来自5个大都市地区，要么是（1）跨学科医疗服务提供者（住院和/或门诊临床医生、家庭健康服务提供者、寄养机构附属人员或政策专业人员），要么是（2）CCI儿童的父母。对访谈记录进行定性分析以找出主题。
所有利益相关者都认为，类似家庭的环境是CCI儿童理想的护理场所，但在每个地区，这些儿童都经历了长时间的住院治疗。住院天数过多的原因包括：（1）医疗团队内部以及临床医生与家庭之间沟通与协调不足；（2）合格的儿科家庭健康服务和耐用医疗设备供应商普遍短缺；（3）家长支持不一致；（4）限制儿科服务资格、州政府支持的病例管理和非医院护理场所的政策。
尽管患有CCI的儿科患者群体不断扩大，但我们缺乏一种旨在尽量减少其住院时间的针对性护理模式。在本研究中，我们提出了几个假设，以探讨扩大家庭护理服务、加强护理协调以及家庭和临床医生支持对减少这类高医疗利用率人群住院天数的潜在影响。
