Sources of informal financial support among adolescent and young adult cancer survivors: a mixed methods analysis from the HIAYA CHAT study

Waters, Austin R.; Berghuijs, Karely M van Thiel; Kaddas, Heydon K.; Lopez, Perla L. Vaca; Chevrier, Amy; Ray, Nicole; Tsukamoto, Tomoko; Allen, Karlie; Fair, Douglas; Lewis, Mark A.; Perez, Giselle K.; Park, Elyse R.; Kirchhoff, Anne C.; Warner, Echo L.

doi:10.1007/s00520-023-07626-5

Cited by 5 publications

(7 citation statements)

References 26 publications

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“…While we know of no current policy nor procedural steps to ameliorate this inherent crowdfunding inequity, what is certain is that such inequity is not due to the individual user's fault, but rather the systemic wealth inequalities across social networks, limiting the crowdfunding potential for many 25 . The findings of this study are consistent with the existing literature, suggesting that when cancer patients are forced to rely on crowdfunding to afford their medical and non‐medical costs, such mechanisms mirror systems of oppression that drive economic inequity in the population 9,25,35,36 . Crowdfunding is not a solution to cancer‐related financial burden but rather one source of financial support used by patients in an often unaffordable healthcare system.…”

Section: Discussionsupporting

confidence: 76%

“…crowdfunding to afford their medical and non-medical costs, such mechanisms mirror systems of oppression that drive economic inequity in the population. 9,25,35,36 Crowdfunding is not a solution to cancer-related financial burden but rather one source of financial support used by patients in an often unaffordable healthcare system.…”

Section: Non-lgbtq+ Campaigns Differential Effect ($) [95% Ci] Predic...mentioning

confidence: 99%

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LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy

Waters,

Easterly,

Turner

et al. 2024

Cancer Medicine

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BackgroundEmerging literature suggests that LGBTQ+ cancer survivors are more likely to experience financial burden than non‐LGBTQ+ survivors. However, LGBTQ+ cancer survivors experience with cost‐coping behaviors such as crowdfunding is understudied.MethodsWe aimed to assess LGBTQ+ inequity in cancer crowdfunding by combining community‐engaged and technology‐based methods. Crowdfunding campaigns were web‐scraped from GoFundMe and classified as cancer‐related and LGBTQ+ or non‐LGBTQ+ using term dictionaries. Bivariate analyses and generalized linear models were used to assess differential effects in total goal amount raised by LGBTQ+ status. Stratified models were run by online reach and LGBTQ+ inclusivity of state policy.ResultsA total of N = 188,342 active cancer‐related crowdfunding campaigns were web‐scraped from GoFundMe in November 2022, of which N = 535 were LGBTQ+ and ranged from 2014 to 2022. In multivariable models of recent campaigns (2019–2022), LGBTQ+ campaigns raised $1608 (95% CI: −2139, −1077) less than non‐LGBTQ+ campaigns. LGBTQ+ campaigns with low (26–45 donors), moderate (46–87 donors), and high (88–240 donors) online reach raised on average $1152 (95% CI: −$1589, −$716), $1050 (95% CI: −$1737, −$364), and $2655 (95% CI: −$4312, −$998) less than non‐LGBTQ+ campaigns respectively. When stratified by LGBTQ+ inclusivity of state level policy states with anti‐LGBTQ+ policy/lacking equitable policy raised on average $1910 (95% CI: −2640, −1182) less than non‐LGBTQ+ campaigns from the same states.Conclusions and RelevanceOur findings revealed LGBTQ+ inequity in cancer‐related crowdfunding, suggesting that LGBTQ+ cancer survivors may be less able to address financial burden via crowdfunding in comparison to non‐LGBTQ+ cancer survivors—potentially widening existing economic inequities.

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Section: Discussionsupporting

confidence: 76%

Section: Non-lgbtq+ Campaigns Differential Effect ($) [95% Ci] Predic...mentioning

confidence: 99%

LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy

Waters,

Easterly,

Turner

et al. 2024

Cancer Medicine

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“…This finding may be particularly important for low income and other at-risk patients who often do not have access to informal financial support from their family and friends. 38 Further, this finding supports recommendations for systematic screening for financial burden in the pediatric oncology setting, as systematic screening may result in better access to formal financial support. 39 At the same time, however, systematic screening may prove unethical if health systems do not have the capacity to close the resource referral loop (e.g., assist caregivers with filling out complicated applications) among caregivers with limited health literacy or time to apply to formal financial support.…”

Section: Discussionsupporting

confidence: 64%

“…In other words, caregivers with the highest financial toxicity and cost‐coping behaviors may not have appropriate access to formal financial support resources through their hospital or other external sources. This finding may be particularly important for low income and other at‐risk patients who often do not have access to informal financial support from their family and friends 38 . Further, this finding supports recommendations for systematic screening for financial burden in the pediatric oncology setting, as systematic screening may result in better access to formal financial support 39 .…”

Section: Discussionsupporting

confidence: 55%

Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients

Waters,

Biddell,

Killela

et al. 2023

Pediatric Blood & Cancer

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BackgroundThe healthcare costs of patients who receive hematopoietic stem cell transplantation (HSCT) are substantial. At the same time, the increasing use of pediatric HSCT leaves more caregivers of pediatric HSCT recipients at risk for financial burden—an understudied area of research.MethodsFinancial burden experienced by caregivers of recipients who received autologous or allogeneic transplants was assessed using an explanatory mixed‐methods design including a one‐time survey and semi‐structured interviews. Financial burden was assessed through an adapted COmprehensive Score for financial Toxicity (COST) as well as questions about the types of out‐of‐pocket costs and cost‐coping behaviors. Chi‐squared or Fisher's exact tests were used to assess differences in costs incurred and coping behaviors by financial toxicity and financial toxicity by demographic factors. Interviews were audio recorded, transcribed, and analyzed using directed content analysis.ResultsOf 99 survey participants, 64% experienced high financial toxicity (COST 22). Caregivers with high financial toxicity were more likely to report costs related to transportation and diet. High financial toxicity was associated with nearly all cost‐coping behaviors (e.g., borrowed money). High financial toxicity was also associated with increased use of hospital financial support and transportation assistance. Qualitative analysis resulted in four categories that were integrated with quantitative findings: (1) care‐related out‐of‐pocket costs incurred, (2) cost‐coping behaviors, (3) financial support resources used, and (4) multilevel recommendations for reducing financial burden.ConclusionsConsidering the substantial, long‐term financial burden among pediatric HSCT patients and their caregivers, this population would benefit from adapted and tailored financial burden interventions.

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“…More than other age groups, AYAs are uninsured 48 and report insufficient financial support to manage their cancer care. 28 Over 25% of reported a coverage gap within the 35 months after cancer diagnosis, and 20% found that physician-recommended medical care was not covered even when they were insured. 29 Moreover, AYAs with lower SES, even with insurance coverage, may be at additional risk for poorer outcomes.…”

Section: The Role Of Insurance Ses and The Aca In Aya Outcomesmentioning

confidence: 99%

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

Kirchhoff,

Waters,

Chevrier

et al. 2024

JCO

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Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]–designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.

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Sources of informal financial support among adolescent and young adult cancer survivors: a mixed methods analysis from the HIAYA CHAT study

Cited by 5 publications

References 26 publications

LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy

LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy

Financial burden and recommended multilevel solutions among caregivers of pediatric hematopoietic stem cell transplant recipients

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

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