Alexander Ariel K, Martinez Isaac, Tefera Raba, Beauchemin Melissa P, Lawhon Valerie M, Nichols Ashley, Rosenberg Abby R, Bhatia Smita, Johnston Emily E
Carleton College, Northfield, MN.
Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL.
J Pediatr. 2025 Jan;276:114269. doi: 10.1016/j.jpeds.2024.114269. Epub 2024 Aug 30.
To explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity.
We performed secondary analysis of semistructured interviews of bereaved parents' perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework.
Most participants were non-Hispanic White (30; 55%), and the most common diagnoses were noncentral nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions.
As FT affected almost all families' EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.
探讨癌症患儿父母在临终时所经历的经济毒性（FT），包括探讨种族和民族差异。
我们对丧亲父母关于优质临终关怀的观点进行了半结构化访谈的二次分析。在加利福尼亚州和阿拉巴马州进行了55次访谈，代表48名儿童（死亡时年龄0 - 21岁），他们在至少6个月前死于癌症。识别出与FT相关的引述，并在没有先验框架的情况下反复将其归纳为主题。
大多数参与者是非西班牙裔白人（30人；55%），最常见的诊断是非中枢神经系统实体瘤（16人；33%）和中枢神经系统肿瘤（16人；33%）。儿童死亡时的平均年龄为11岁，访谈前的中位年龄为4岁。几乎所有父母（52人；95%）都讨论了FT，包括所有黑人及西班牙裔父母。父母们将交通、住房、其他基本需求、丧葬费用、医疗费用以及工作中断视为临终时经济毒性的促成因素。财务健康的障碍包括保险理赔、医院提供的财务支持不足以及治疗带来的长期经济毒性。许多父母讨论了医院和社区如何成为财务健康的促进者。在某些情况下，经济状况使家庭无法获得护理服务和心理健康支持，并影响了临终决策。
由于经济毒性影响了几乎所有家庭的临终体验，儿科肿瘤项目应在临终时常规筛查经济毒性，并确保有应对资源。
