Child Life Program, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
School of Medicine, Ponce Health Sciences University, Ponce, Puerto Rico, Puerto Rico.
Pediatr Blood Cancer. 2024 Aug;71(8):e31066. doi: 10.1002/pbc.31066. Epub 2024 May 16.
Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions.
In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis.
Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted.
All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.
以传统为导向的干预措施有可能为临终和丧亲期间的儿科肿瘤患者及其家属提供安慰。认证儿童生活专家通常提供这些服务，但目前尚不清楚在提供以传统为导向的干预措施方面是否存在差异。
在这项回顾性死亡队列研究中，我们检查了 2015 年至 2019 年期间死亡的 678 名儿科肿瘤患者样本的人口统计学和临床特征。采用双变量分析评估了接受任何与不接受以传统为导向的干预措施的患者之间的差异。单变量和多变量逻辑回归模型评估了基线特征与接受以传统为导向的干预措施的可能性之间的关联。进一步的多变量分析探讨了单变量分析中确定的显著变量的联合效应。
52%的患者接受了以传统为导向的干预措施。年龄较大的青少年（≥13 岁）（比值比 [OR]：1.73，p=0.007）比年龄较小的青少年更不可能接受以传统为导向的干预措施。与在 SJCRH 地点去世的患者相比，在家/临终关怀中去世的患者（OR：19.98，p<0.001）也更不可能接受干预措施。西班牙裔患者（OR：1.53，p=0.038）和接受姑息治疗的患者（OR：10.51，p<0.001）更有可能接受干预措施。没有注意到明显的种族关联。
所有癌症儿童和青少年都应在生命末期获得高质量的护理，包括获得以传统为导向的干预措施，但在本队列中，近一半的患者没有接受这些服务。通过确定与接受以传统为导向的干预措施几率降低相关的人口统计学和临床特征，医疗保健专业人员可以改进临终关怀流程以提高可及性。尽早引入以传统为导向的干预措施并增加在社区空间的曝光率，可能会增加儿科肿瘤患者获得以传统为导向的干预措施的机会。
