Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework

Cheung, Christabel K.; Nishimoto, Patricia W.; Katerere-Virima, Thuli; Helbling, Laura E.; Thomas, Bria N.; Tucker-Seeley, Reginald

doi:10.1080/07347332.2021.1937771

Journal of Psychosocial Oncology

2021

DOI: 10.1080/07347332.2021.1937771

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Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework

Christabel K. Cheung

Patricia W. Nishimoto

Thuli Katerere-Virima

et al.

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Cited by 3 publications

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“…In 2022, an estimated 87,050 of the 1.9 million new cancer cases in the USA were diagnosed among adolescent and young adult (AYA) patients aged 15–39 years [ 1 ]. AYAs face heightened vulnerabilities compared with pediatric and older adult oncology populations, including disparities in diagnosis [ 2 ], survival rates [ 3 ], financial hardship [ 4 ] and access to cancer treatments [ 5 ], with implications for long-term survivorship [ 6 ]. Black, Indigenous and People of Color (BIPOC; also referred to as ‘racially minoritized’) AYA cancer patients experience further marginalization.…”

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confidence: 99%

BIPOC Experiences of (anti-)Racist Patient Engagement in Adolescent and Young Adult Oncology Research: an Electronic Delphi Study

Cheung,

Miller,

Goings

et al. 2024

Future Oncol.

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Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

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confidence: 99%

BIPOC Experiences of (anti-)Racist Patient Engagement in Adolescent and Young Adult Oncology Research: an Electronic Delphi Study

Cheung,

Miller,

Goings

et al. 2024

Future Oncol.

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Stakeholder‐informed conceptual framework for financial burden among adolescents and young adults with cancer

et al. 2021

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Background 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. Methods 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. Results 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. Conclusions 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.

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The long-term financial experiences of adolescent and young adult cancer survivors

et al. 2022

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Background Cancer-related financial hardship can negatively impact financial well-being and may prevent adolescent and young adult (AYA) cancer survivors (ages 15–39) from gaining financial independence. This analysis explored the financial experiences following diagnosis with cancer among AYA survivors. Methods We conducted a cross-sectional, anonymous survey of a national sample of AYAs recruited online. The Comprehensive Score for Financial Toxicity (COST) and InCharge Financial Distress/Financial Well-Being Scale (IFDFW) assessed financial hardship (cancer-related and general, respectively), and respondents reported related financial consequences and financial coping behaviors (both medical and non-medical). Results Two hundred sixty-seven AYA survivors completed the survey (mean 8.3 years from diagnosis). Financial hardship was high: mean COST score was 13.7 (moderate-to-severe financial toxicity); mean IFDFW score was 4.3 (high financial stress). Financial consequences included post-cancer credit score decrease (44%), debt collection contact (39%), spending more than 10% of income on medical expenses (39%), and lacking money for basic necessities (23%). Financial coping behaviors included taking money from savings (55%), taking on credit card debt (45%), putting off major purchases (45%), and borrowing money (42%). In logistic regression models, general financial distress was associated with increased odds of experiencing financial consequences and engaging in both medical- and non-medical-related financial coping behaviors. Discussion AYA survivors face long-term financial hardship after cancer treatment, which impacts multiple domains, including their use of healthcare and their personal finances. Interventions are needed to provide AYAs with tools to navigate financial aspects of the healthcare system; connect them with resources; and create systems-level solutions to address healthcare affordability. Implications for Cancer Survivors Survivorship care providers, particularly those who interact with AYA survivors, must be attuned to the unique risk for financial hardships facing this population and make efforts to increase access available interventions.

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Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework

Cited by 3 publications

References 33 publications

BIPOC Experiences of (anti-)Racist Patient Engagement in Adolescent and Young Adult Oncology Research: an Electronic Delphi Study

BIPOC Experiences of (anti-)Racist Patient Engagement in Adolescent and Young Adult Oncology Research: an Electronic Delphi Study

Stakeholder‐informed conceptual framework for financial burden among adolescents and young adults with cancer

The long-term financial experiences of adolescent and young adult cancer survivors

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