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Mobilizing Research to Understand the Impact of Financial Toxicity Among Adolescents and Young Adults Diagnosed With Chronic Diseases

2023; Elsevier BV; Volume: 73; Issue: 3 Linguagem: Inglês

10.1016/j.jadohealth.2023.05.020

1879-1972

Lauren V. Ghazal, Katherine Wentzell, Julia E. Blanchette,

Family Support in Illness

The critical developmental periods of adolescence and young adulthood encompass many life changes, instability, and important transitions and milestones, such as pursuing higher education, beginning a career, balancing social and family life, establishing one's identity, and working towards various types of independence, including attitudinal, emotional, physical, and financial self-sufficiency [[1]Arnett J.J. Emerging adulthood. A theory of development from the late teens through the twenties.Am Psychol. 2000; 55: 469-480Crossref PubMed Scopus (9297) Google Scholar]. Specifically, in the pathway toward financial independence at this time of the life course, adolescents and young adults (AYAs; ages 15–39) may also experience financial stressors when living with or receiving a chronic disease diagnosis [[1]Arnett J.J. Emerging adulthood. A theory of development from the late teens through the twenties.Am Psychol. 2000; 55: 469-480Crossref PubMed Scopus (9297) Google Scholar]. In this commentary, we provide a novel conceptual model that leverages the evidence base on financial challenges in AYAs living with chronic diseases, using diabetes and cancer as exemplars. The negative impact of medical-related financial burden has been increasingly described in the literature as the concept of financial toxicity, which has been defined in the oncology literature as the layering of objective financial burden and subjective financial distress associated with a chronic disease [2Vitale R.J. Wentzell K. Laffel L.M.B. "Fear that one day i may not be able to afford insulin": The emotional burden of diabetes costs during emerging adulthood.Diabetes Technol Ther. 2022; 24: 915-919Crossref PubMed Scopus (1) Google Scholar, 3Blanchette J.E. Toly V.B. Wood J.R. Financial stress in emerging adults with type 1 diabetes in the United States.Pediatr Diabetes. 2021; 22: 807-815Crossref PubMed Scopus (10) Google Scholar, 4Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. Objective financial burden refers to the ratio of health-related out-of-pocket costs (e.g., copays, deductibles) compared to income. Subjective financial distress refers to the affective experiences of anxiety or worry related to current and/or future costs of disease management. Baseline financial well-being is often defined as financial resources, insurance status, employment, and financial literacy, and deficiencies in any of these indicators may contribute to financial toxicity [[4]Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. AYAs are particularly susceptible to the negative health effects of financial toxicity, including morbidity, mortality, and worse quality of life [[4]Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. The number of AYAs in the United States diagnosed with a chronic disease (e.g., diabetes, cancer) has rapidly grown, and AYAs with childhood chronic conditions (e.g., cystic fibrosis, congenital heart defects, sickle cell disease) live much longer into adulthood [[5]Lawrence J.M. Divers J. Isom S. et al.Trends in prevalence of type 1 and type 2 diabetes in children and adolescents in the US, 2001-2017.JAMA. 2021; 326: 717-727Crossref PubMed Scopus (158) Google Scholar,[6]Miller K.D. Fidler-Benaoudia M. Keegan T.H. et al.Cancer statistics for adolescents and young adults, 2020.CA: A Cancer J Clin. 2020; 70: 443-459Crossref PubMed Scopus (487) Google Scholar]. While there is substantial medical and financial burden across the lifespan, AYAs are a distinct group that are particularly affected. Though the experience of financial toxicity may vary slightly over the span of this developmental stage (e.g., ages 15–19 vs. 20–25 years), AYAs in general are, for the first time in the life course, navigating the healthcare system, utilizing health insurance, and managing the transition from pediatric to adult healthcare. As AYAs living with chronic disease endure additional health-related financial responsibilities and stressors, there are negative effects on self-management such as worry about treatment costs and health insurance [2Vitale R.J. Wentzell K. Laffel L.M.B. "Fear that one day i may not be able to afford insulin": The emotional burden of diabetes costs during emerging adulthood.Diabetes Technol Ther. 2022; 24: 915-919Crossref PubMed Scopus (1) Google Scholar, 3Blanchette J.E. Toly V.B. Wood J.R. Financial stress in emerging adults with type 1 diabetes in the United States.Pediatr Diabetes. 2021; 22: 807-815Crossref PubMed Scopus (10) Google Scholar, 4Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. Low levels of health insurance and financial literacy, high uninsured rates, low rates of employer-sponsored private health insurance, and high poverty and unemployment are present among the general AYA population and contribute to medical-related financial toxicity [[3]Blanchette J.E. Toly V.B. Wood J.R. Financial stress in emerging adults with type 1 diabetes in the United States.Pediatr Diabetes. 2021; 22: 807-815Crossref PubMed Scopus (10) Google Scholar,[7]Centers for Medicare & Medicaid Services (CMS)Young adults and the affordable care act: Protecting young adults and eliminating burdens on families and businesses | CMS.https://www.cms.gov/CCIIO/Resources/Files/adult_child_fact_sheetDate: 2021Date accessed: January 3, 2023Google Scholar]. In fact, survivorship can be challenged by financial toxicity, and there is an urgent need for collaborative research across disease states to improve overall AYA financial well-being and quality of life by considering shared challenges related to out-of-pocket expenses, health-related debt, and lack of employment opportunities. As cancer and diabetes are two of the most common life-threatening diseases diagnosed in AYAs, these conditions present as key exemplars to explore financial toxicity collaborations. Researchers in diabetes and oncology have demonstrated that AYAs experience financial toxicity [2Vitale R.J. Wentzell K. Laffel L.M.B. "Fear that one day i may not be able to afford insulin": The emotional burden of diabetes costs during emerging adulthood.Diabetes Technol Ther. 2022; 24: 915-919Crossref PubMed Scopus (1) Google Scholar, 3Blanchette J.E. Toly V.B. Wood J.R. Financial stress in emerging adults with type 1 diabetes in the United States.Pediatr Diabetes. 2021; 22: 807-815Crossref PubMed Scopus (10) Google Scholar, 4Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. In oncology, research is moving toward development of interventions to mitigate financial toxicity including financial literacy education programs and/or toolkits, while in diabetes, researchers have just begun to discuss the adaptation of financial toxicity measurement. The growing awareness of cancer treatment's impact on patients and their families comes from more expensive treatments and rising healthcare costs [[8]Parsons S.K. Keegan T.H.M. Kirchhoff A.C. et al.Cost of cancer in adolescents and young adults in the United States: Results of the 2021 report by deloitte access economics, commissioned by teen cancer America.J Clin Oncol. 2023; 41: 3260-3268Crossref PubMed Scopus (1) Google Scholar]. Additionally, in diabetes, the cost of insulin has risen 1000% over the last two decades, and the recent increasing uptake of multiple diabetes technologies has resulted in dramatic increases in out-of-pocket costs [[9]Rajkumar S.V. The high cost of insulin in the United States: An urgent call to action.Mayo Clinic Proc. 2020; 95: 22-28Abstract Full Text Full Text PDF PubMed Scopus (22) Google Scholar]. In Figure 1, we harmonize developmentally-focused concepts and connections within financial toxicity across cancer and diabetes. This conceptual model describes, contrasts, and articulates the attributes and consequences of financial toxicity among AYAs diagnosed with and living with these chronic diseases to better understand areas for future intervention. For example, cancer diagnoses in AYAs present an immediate threat to life, where treatment is often initiated immediately for a projected time. Therefore, financial decision-making during the acute survivorship period (diagnosis through active treatment) may include little thought about the future. However, in diabetes, insulin is a life-long treatment, yet just one day without it can lead to hospitalization and death; thus, this experience presents different financial decision-making challenges. Evidence on the rationality of financial decision-making during diagnosis to active treatment has yet to be explored. However, using behavioral economic theory [[10]Wong C.A. Hakimi S. Santanam T.S. et al.Applying behavioral economics to improve adolescent and young adult health: A developmentally-sensitive approach.J Adolesc Health. 2021; 69: 17-25Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar], we presume financial decisions made immediately following cancer diagnosis and during active treatment, for example, may differ from those made before diagnosis or during remission. Additional research is needed to explore financial decision-making alongside the trajectory of chronic disease management for AYAs. Even though some financial decisions may be unique to a disease state, competing financial pressures specific to AYA development can result from financial self-insufficiency. Negative consequences of this financial toxicity include less optimal disease management, increased emotional burden, financial problem-solving behaviors, and poor financial well-being [[4]Ghazal L.V. Gormley M. Merriman J.D. Santacroce S.J. Financial toxicity in adolescents and young adults with cancer: A concept analysis.Cancer Nurs. 2021; 44: E636-E651Crossref PubMed Scopus (14) Google Scholar]. Guided by a recent report detailing costs of cancer among AYAs in the United States [[8]Parsons S.K. Keegan T.H.M. Kirchhoff A.C. et al.Cost of cancer in adolescents and young adults in the United States: Results of the 2021 report by deloitte access economics, commissioned by teen cancer America.J Clin Oncol. 2023; 41: 3260-3268Crossref PubMed Scopus (1) Google Scholar], captured costs shared by AYAs with diabetes and cancer are also depicted in Figure 1. Costs related to out-of-pocket expenses including insurance copays, travel, and missed time from work and school are critical areas for policy intervention. Such policies should support AYAs with chronic diseases remaining in or returning to the workplace and expand Medicaid to improve insurance coverage and access [[11]Kirchhoff A. Jones S. Financial toxicity in adolescent and young adult cancer survivors: Proposed directions for future research.J Natl Cancer Inst. 2021; 113: 948-950Crossref PubMed Scopus (11) Google Scholar]. Furthermore, AYAs experience competing financial pressures, which can result in financial insufficiency, leading to less optimal disease self-management, additional emotional burden, negative financial problem-solving behaviors, and poor financial well-being. A strategic response to clarify financial toxicity in AYAs living with chronic diseases remains critical as clinicians and scientists have little control over AYAs' income or expenses, and financial toxicity may cause life-long disruptions. Research efforts must use developmentally appropriate, multidimensional measures and include prospective approaches to clarify how financial toxicity and economic hardship may change across life stages among not only AYAs but also their caregivers and households. Further, we acknowledge financial toxicity also has relevance among AYAs with complex illness and mental health disorders, and in a call to truly mobilize research, future research should include these additional illnesses. Considering all this, healthcare team members must be given the skills and tools to address cost-related concerns during visits and be given the resources to refer AYAs to organizations that provide insurance and disease-related resources to improve financial and health insurance literacy. In addition, advocating for policy changes to improve access to state and federal-level health insurance must be a priority. In this initial effort to present the experience of financial toxicity across diabetes and cancer in AYAs, we aim to amplify the need for collaborative research to enact far-reaching and lasting changes to improve health outcomes. Dr. Ghazal receives research support from the National Cancer Institute's institutional training grant T32-CA-236621. Dr. Wentzell receives research support from the National Institute of Diabetes and Digestive and Kidney Diseases institutional training grant T32-DK-007260. Dr. Blanchette receives research support from the Leona M. and Harry B. Helmsley Charitable Trust. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, the National Cancer Institute, or the Leona M. and Harry B. Helmsley Charitable Trust.