Department of Paediatrics, University Hospital Limerick, Limerick, Ireland.
Palliative Medicine Department, Milford Care Centre, Limerick, Ireland.
Ir J Med Sci. 2023 Jun;192(3):1285-1290. doi: 10.1007/s11845-022-03134-3. Epub 2022 Aug 26.
Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life.
Highlighting collaboration between pediatric and PC services is essential in providing seamless care.
Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period.
Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services.
Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.
对患有生命末期疾病的儿童进行姑息治疗（PC）是一种实现最佳生活质量的整体方法。
强调儿科和 PC 服务之间的合作对于提供无缝护理至关重要。
回顾性获取包括患者队列、疾病谱、死亡地点以及在爱尔兰中西部地区 7 年内患有 LLC 的儿童的资源需求在内的数据。
确定了 77 名患者（n=77）；5 名仍在接受治疗，4 名已出院，68 名已死亡。该队列的年龄从 1 天到 17 岁不等，平均年龄约为 6 岁。35%的患者不到 1 岁。51%为男性。71%的患者最初因临终关怀而被转介至 PC，29%因症状管理而被转介。44%的患者在转介至 PC 之前已经有家庭支持服务。为 65%的患者制定了高级护理计划。在死亡的患者中（n=68），70.5%在家中死亡，25%在医院死亡，4.4%在养老院或儿童收容所死亡。生命末期疾病儿童临床护士协调员（CNCCLLC）参与了 88%的患者。专业 PC 团队参与了 87%；65 名患者接受了社区支持，31 名患者接受了院内支持，29 名患者同时接受了医院和社区服务。
我们的研究强调了 LLC 的数量不断增加，儿科和 PC 服务目前需要更多的资源和发展。
