Vern-Gross Tamara Z, Lam Catherine G, Graff Zachary, Singhal Sara, Levine Deena R, Gibson Deborah, Sykes April, Anghelescu Doralina L, Yuan Ying, Baker Justin N
Department of Radiation Oncology, University of Florida Proton Therapy Institute, Jacksonville, Florida, USA.
Division of Solid Tumors, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
J Pain Symptom Manage. 2015 Sep;50(3):305-12. doi: 10.1016/j.jpainsymman.2015.03.008. Epub 2015 Apr 16.
Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs.
We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service.
We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children's Research Hospital, before and after implementation of the institutional QoL/PC service in January 2007. Patients who died between July 2001 and February 2005 (historical cohort; n = 134) were compared with those who died between January 2007 and January 2012 (QoL/PC cohort; n = 57).
Median time to first QoL/PC consultation was 17.2 months (range 9-33). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms, 94% required intervention for ≥3 symptoms, and 76% received intervention for ≥5 symptoms. Eighty-three percent achieved their preferred place of death. Compared with the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median 12 vs. 3; P < 0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median 195 vs. 2 days; P < 0.001), and greater hospice enrollment (71% vs. 46%, P = 0.002).
Although children with solid tumor malignancies may have significant symptom burden toward the end of life, positive changes were documented in communication and in places of care and death after implementation of a pediatric PC service.
实体瘤儿科患者可能承受着巨大的症状负担，这会影响生活质量（QoL）和临终关怀需求。
我们评估了实体瘤患儿的结局和症状，并比较了专门的机构儿科姑息治疗（PC）服务实施后临终关怀模式。
我们对2007年1月机构QoL/PC服务实施前后在圣裘德儿童研究医院接受治疗的实体瘤患儿进行了一项回顾性队列研究。将2001年7月至2005年2月期间死亡的患者（历史队列；n = 134）与2007年1月至2012年1月期间死亡的患者（QoL/PC队列；n = 57）进行比较。
首次QoL/PC咨询的中位时间为17.2个月（范围9 - 33个月）。咨询时，60%的儿童未接受或已停止针对癌症的治疗。在QoL/PC队列中，54例患者有记录的症状，94%的患者因≥3种症状需要干预，76%的患者因≥5种症状接受了干预。83%的患者在其首选的死亡地点离世。与历史队列相比，QoL/PC队列中每位患者的临终讨论更多（中位次数12次对3次；P < 0.001），临终讨论更早，下达不进行心肺复苏医嘱前的时间更长（中位时间195天对2天；P < 0.001），临终关怀登记率更高（71%对46%，P = 0.002）。
尽管实体瘤恶性肿瘤患儿在生命末期可能承受着巨大的症状负担，但在儿科PC服务实施后，沟通以及护理和死亡地点方面都有积极变化记录。
