从医院到家庭：转介至儿科临终关怀和家庭为基础的姑息治疗。
From Hospital to Home: Referrals to Pediatric Hospice and Home-based Palliative Care.
机构信息
Division of Comfort and Palliative Care, Department of Anesthesia Critical Care Medicine (D.L.), Children's Hospital Los Angeles, Los Angeles, CA, USA and Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, California, USA.
Department of Anesthesia Critical Care Medicine (M.J.K.), Children's Hospital Los Angeles, Los Angeles, California, USA.
出版信息
J Pain Symptom Manage. 2023 Jun;65(6):570-579. doi: 10.1016/j.jpainsymman.2023.02.009. Epub 2023 Feb 23.
CONTEXT
Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices.
OBJECTIVES
To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received.
METHODS
Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC.
RESULTS
Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis.
CONCLUSION
Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
背景
医院为基础的儿科舒缓治疗（PPC）可能有助于优化向有严重疾病的儿童提供社区为基础的临终关怀和家庭为基础的姑息治疗（HBPC）的转诊，但对于他们的转诊实践知之甚少。
目的
描述来自 PPC 团队的社区计划转诊，确定与转诊类型相关的因素，以及患者需求和接受转诊之间潜在的不匹配。
方法
对一家大型城市儿童医院 2017 年接受 PPC 团队治疗的患者进行图表摘录，至少随访 6 个月或直至死亡，包括临床和人口统计学特征，以及临终关怀和 HBPC 的转诊。
结果
在 302 名符合研究条件的患者中，有 25%在首次 2017 年就诊期间住院期间死亡。在其余 228 名患者中，有 42 名（18.4%）被转介到 HBPC，58 名（25.4%）被转介到临终关怀。不包括转介到临终关怀的患者，只有三分之一具有人口统计学资格的患者被转介到 HBPC；在 ICU 接受治疗的患者最不可能被转介。58 名被转介到临终关怀的患者中，超过一半在研究期间死亡（n=34，58.6%）；有癌症的患者后代更有可能（P=0.002），而神经系统疾病的患者后代更不可能（P=0.021）。
结论
尽管符合人口统计学资格，但由医院为基础的 PPC 团队治疗的患者中，只有少数接受了临终关怀或 HBPC 的转诊。从 ICU 出院的儿童和患有神经系统疾病的儿童可能面临错过最符合其需求的转诊的风险更高。未来的研究应确定和解决转诊不匹配的原因。可能还需要倡导适合患者不断变化的需求的计划。
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