Zhang Anan, Bing Ling, Mi Qiang, Zhou Fen, Wang Jianmin
Department of Hematology/Oncology, Shanghai Children's Medical Center, Affiliated to Shanghai Jiaotong University School of Medicine, Shanghai, China.
Palliat Med Rep. 2021 Jan 6;2(1):1-8. doi: 10.1089/pmr.2020.0030. eCollection 2021.
Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Single-center retrospective study. The core team members included oncologists, nurses, and a social worker. The team delivered palliative care through the outpatient clinic, consultations, a 24/7 hotline, and a hospice room located in the observation ward. Patients were referred by pediatric oncologists. We analyzed data for 92 children (54 boys and 38 girls; aged 7 months to 16 years) who required palliative care from August 2012 to August 2018. The most common primary diseases were leukemia and neuroblastoma. We investigated the time from referral to death, symptoms during the prior month, the effects of informing children above eight years, and family satisfaction. Among 88 deaths, the median time from referral to death was 17 (range 1-218) days. Most children had multiple symptoms (mean ± standard deviation 4.2 ± 3.2 per child). The most common symptoms in the last month of life were pain, loss of appetite, fatigue, fever, and dyspnea. Children above eight years who were not informed about their condition experienced more anxiety or depression. All families were satisfied with the services. The palliative care counseling team is feasible and could be complementary to conventional medicine in caring for children with life-limiting illnesses. This model has an important role in PPC in China or developing countries with scarce medical resources.
儿童姑息治疗(PPC)无法满足当前需求,在低收入和中等收入国家尤其如此。我们评估了中国一家三级儿童医院中首个为癌症患儿提供服务的PPC团队。单中心回顾性研究。核心团队成员包括肿瘤学家、护士和一名社会工作者。该团队通过门诊、会诊、全天候热线以及位于观察病房的临终关怀室提供姑息治疗。患者由儿科肿瘤学家转诊。我们分析了2012年8月至2018年8月期间92名需要姑息治疗的儿童(54名男孩和38名女孩;年龄7个月至16岁)的数据。最常见的原发性疾病是白血病和神经母细胞瘤。我们调查了从转诊到死亡的时间、前一个月的症状、告知8岁以上儿童病情的影响以及家庭满意度。在88例死亡病例中,从转诊到死亡的中位时间为17天(范围1 - 218天)。大多数儿童有多种症状(平均±标准差为每名儿童4.2±3.2种)。生命最后一个月最常见的症状是疼痛、食欲不振、疲劳、发热和呼吸困难。未被告知病情的8岁以上儿童经历了更多焦虑或抑郁情绪。所有家庭对服务都很满意。姑息治疗咨询团队是可行的,在照顾患有危及生命疾病的儿童方面可作为传统医学的补充。这种模式在中国或医疗资源稀缺的发展中国家的PPC中具有重要作用。