Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston Salem, North Carolina, USA.
Department of Communication, Wake Forest University, Winston Salem, North Carolina, USA.
Psychooncology. 2022 Apr;31(4):597-605. doi: 10.1002/pon.5843. Epub 2021 Nov 5.
Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure.
In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups.
Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs.
Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.
癌症及其治疗可能会给患者带来沉重的经济负担，尤其是青少年和年轻成年人（AYA），因为他们正处于一个专注于完成学业和独立的发展阶段。本研究的目的是构建 AYA 癌症患者经济负担的概念模型，为开发经济负担测量工具提供信息。
通过有针对性的选择利益相关者样本（36 名 AYA 癌症患者和 36 名 AYA 肿瘤学医疗保健提供者）进行深入的概念启发访谈。采用恒定比较法确定主题，以说明利益相关者群体中 AYA 患者的经济负担体验。
共出现 11 个经济负担主题：（1）社会经济地位和年龄的影响；（2）高昂的癌症治疗费用；（3）间接费用的“连锁反应”；（4）对费用的认识有限（青少年）；（5）情绪影响；（6）在医疗保健系统中感到不知所措；（7）治疗决策调整；（8）减少开支；（9）应对策略；（10）经济支持；（11）持久影响。该概念模型强调了经济负担的物质、心理社会和行为领域的重要性，重点关注癌症连续体中的阶段和 AYA 患者在经济负担体验中的发展阶段。
AYA 患者和提供者的意见突出了经济负担对这一幸存者群体的深远影响。下一步将开发并测试一种针对 AYA 癌症幸存者的患者报告的经济负担测量工具。
