Adolescent and young adult (AYA) cancer survivors (ie, those diagnosed between the ages of 15 and 39 years through end of life)1 typically require intensive multimodal cancer therapy and supportive care, followed by a period of monitoring for recurrent disease and long-term complications that can arise from treatments.2 Efforts to cure or control cancer contribute to financial toxicity, a treatment-related consequence gaining increasing global attention. Across cancer types, financial toxicity may result in suboptimal coping and poorer quality of life as compared with AYAs who do not experience financial toxicity.3 Treatments to cure or control cancer have financial costs that include out-of-pocket payments for cost sharing (eg, deductibles), uncovered treatment-related expenses, and lost income and productivity due to treatment-related employment disruptions and symptoms such as fatigue. The financial costs associated with treatment are further protracted by the need for regular follow-up to monitor for disease recurrence and to identify and manage adverse effects of treatments.
The Concept of Financial ToxicitySince being applied to cancer populations in 20094 and then illuminated in 2013,5 financial toxicity has been used in reference to financial burden experienced by individuals with chronic illnesses and their caregivers. However, we have not yet captured the breadth of the phenomenon, its consequences, and effective ways of mitigating this problem for cancer survivors and their families and/or caregivers at various phases across the illness trajectory.5,6
Globally and across various health service delivery models, healthcare systems and oncology professionals are being called to address both the rising costs of healthcare and the extent to which those costs are passed on to generate financial toxicity.7,8 Recent systematic reviews on financial toxicity in patients with cancer8–10 cite the lack of a clear definition and distinctions between financial toxicity and terms such as financial burden, distress, and hardship as major limitations for advancing this area of science11 including through collaboration among economists, cancer epidemiologists, cancer care delivery researchers, and oncology clinicians, among others.9 To the best of our knowledge, financial toxicity induced by the diagnosis and treatment of cancer or any other chronic health problem has not been subjected to formal concept analysis.11
Further, consensus is lacking on how financial toxicity presents in specific cancer populations, particularly among AYA survivors, who, some argue, likely experience greater financial toxicity than older individuals living with cancer.12–14 Clarifying the concept through formal concept analysis may assist in identifying appropriate timing and targets for interventions to alleviate financial toxicity for AYA cancer survivors. Therefore, the purpose of this study is to analyze the concept financial toxicity in the context of AYA cancer survivorship.
Methods DesignConcept analysis is a philosophical inquiry that involves strategic analysis and synthesis of the literature to elucidate concepts, distinguish between related concepts, and build grand and more practical theories15 to advance science.16 Unlike integrative or literature reviews, in Rodgers’ evolutionary method,16 the contextual basis comes before (antecedents) or as a result of (consequences) the concept.17 We selected Rodgers’ evolutionary method because financial toxicity is a dynamic concept that will evolve over time with advances in cancer therapeutics, changes in policies at multiple levels, and consequent to historic events such as the coronavirus disease 2019 (COVID-19) pandemic.16
Sample SelectionThe primary author (L.V.G.) searched computerized databases, with the assistance of an experienced health sciences librarian, to identify peer-reviewed articles published in English between January 2013 (introduction of the term financial toxicity)5 and December 2020. The initial search captured 62 articles about the population (AYA cancer survivors) and the concept (financial toxicity).
Next, the primary author used ancestry (checking reference lists for past studies) and descendancy (checking where early articles were published) approaches to identify additional search terms18 to support the background of the analysis and identify convergence in the literature.16 The second database search in April 2020, then rerun in December 2020, resulted in an additional 3320 articles (Figure 1, Table 1). The final step of the search process included a review of both national cancer and AYA-specific cancer websites and recent work by scientists with expertise in financial toxicity.
Figure 1:PRISMA (Preferred Reporting Items of Systematic Reviews and Meta-analysis) flowchart.
Table 1 - Database Searches Databases Search Date Search String PubMed,The primary author used Covidence, a browser-based software, for article management. After duplicates were removed, the first round of screening included review of articles by title and abstract, followed by review of the article text to assess for eligibility. Articles were eligible for inclusion in the concept analysis if (a) the study sample included adolescent and/or young adult cancer survivors, and (b) financial toxicity, or a related term, was the primary independent or dependent variable. Articles including AYA cancer survivors diagnosed during infancy or childhood (ages 0-16 years) were not eligible. Articles reporting results with a broader range of ages in their sample (eg, younger cancer survivors aged <65 years) were included if the article discussed findings specific to the AYA subsample. Theory, opinion pieces, and editorials contributed to the background and discussion, but not to the final sample of articles analyzed.
Data Source ManagementThe primary author read through each article twice before extracting data. Then keywords relating to the components of the concept analysis were abstracted from the articles into a predetermined matrix with the following headings: financial toxicity conceptualization, surrogate and related terms, antecedents, attributes, and consequences. The matrix assisted with identifying common themes among the data sources, as well as areas of divergence. Based on this matrix, tables were constructed to highlight the components of the concept analysis.
ResultsThe concept analysis included 23 articles (Figure 1, Table 2). Studies used a range of descriptive designs, including 5 literature reviews.19,23,24,35,36 Whereas the study samples were predominantly White and female identifying, 1 study20 was specific to African American and Latina breast cancer survivors. Two articles focused on AYAs with specific types of cancer (hematologic28 and hematologic or testicular25). Fifteen articles focused on AYA survivors living in the United States, whereas 3 included global samples.23,24,36 Articles spanned various disciplines, including economics, psychology, medicine, nursing, and policy. The results are presented as follows: conceptualization of financial toxicity, surrogate and related terms, antecedents, attributes, consequences, and an exemplar of financial toxicity in AYA cancer survivors.
Table 2 - Evidence Table of Articles Selected for Analysis Author Purpose Country Sample Design Measure Main Finding Regarding Financial Toxicity Altice et alAbbreviations: AYA, adolescent and young adult; EORTC QLQ-C30, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; MEPS, Medical Expenditures Panel Survey; OOP, out-of-pocket; PROFILES, Patient Reported Outcomes Following Treatment and Long-term Evaluation of Survivorship; YA, young adult.
Financial toxicity literature spanned age groups/developmental stages, cancer types, and illness phases within the AYA population (Table 2).30,31,36–39 Identified gaps included no indication of how or when an individual is determined to have financial toxicity or whose role it is to make that determination. Some articles focused on supportive care needs highly relevant to AYAs, including fertility preservation.22 Two articles highlighted the relationship between employment and financial toxicity,30,34 whereas others described financial toxicity in light of escalating costs (eg, higher prices of new classes of therapeutic agents and targeted therapy).40,41
As no universally accepted definition of financial toxicity exists,8 several definitions were identified in the literature (Table 3). Building on the work of Carrera et al,40 we offer the following definition of financial toxicity: the demands of cancer care and treatment on personal finances create financial burden, driving financial distress, which leads to financial problem-solving behaviors, material hardship, poor financial well-being, and deteriorated quality of life.
Table 3 - Existing Definitions and Components of Financial Toxicity Author and Year Definition of Financial Toxicity Components of Financial Toxicity Area Carrera et al (2018)40 “Unintended—but not necessarily unanticipated—objective financial burden on and subjective financial distress experienced by patients with cancer as a result of their treatment, particularly as they relate to newer classes of drugs and concomitant health services” (p154) Financial burden, financial distress Health (medicine) Chan et al (2019)41 “Financial distress/hardship associated with cancer and its treatment” (p646) Financial distress, financial hardship Health (nursing and medicine) Chi (2017)42 “Objective and subjective measures of financial strain that many people with cancer face as a result of costly care and treatment” (p1) Objective and subjective financial strain Social work de Souza et al (2014)43 “Objective financial consequences of cancer, as well as the subjective financial concerns” (p476) Financial consequences, financial concerns Health (medicine) Desai and Gyawali (2020)11 “Detrimental effects of the excess financial strain caused by the diagnosis of cancer on the well-being of patients, their families and society” (p1) Detrimental effects, financial strain Health (medicine) Fessele (2017)44 “Increasingly frequent problems resulting from high medical payments combined with lower income because of job interruption” (p762) High medical payments, lower income Health (nursing) Jones et al (2020)28 “Any negative effect or its treatment on a patient’s finances” (p1) Negative effect on finances Health (medicine) Lentz et al (2019)3 “Adverse impact of a cancer diagnosis on a patient’s financial well-being resulting from direct or indirect costs” (p1) Financial well-being, direct or indirect costs Health (medicine) Pearce et al (2019)34 “Both the financial consequences of cancer and its treatment, as well as the resulting concern or distress” (p10) Financial consequences, financial concern, financial distress Economics Salsman et al (2019)36 “Adverse economic consequences to patients resulting from treatments and disease; conveys the harmful personal financial burden faced by patients receiving cancer treatment” (p3) Economic consequences and financial burden Health (medicine) Thomas et al (2019)10 “Financial burden and resulting financial distress a patient or caregiver experiences that is associated with cancer and its treatment” (p5) Financial burden, financial distress Health (nursing) Zafar and Abernethy (2013)5 Objective financial burden and subjective financial distress Financial burden, financial distress Health (medicine)Surrogate terms are words other than the concept of interest that express the same concept, whereas related terms do not fully encompass the same attributes as the concept.16,17 No surrogate terms were identified. Related terms included financial/economic difficulty, burden, devastation, distress, hardship, strain, stress, calamities, consequences, loss, vulnerabilities, and well-being. Salsman et al36 described multiple related terms in their review of the financial impact of cancer on AYAs, and although several of the terms overlap, an indication of their appropriateness as related terms, they do not fully capture all the phenomena represented by financial toxicity. To address this, Table 4 expands on the terms Salsman et al36 employed and displays the relationship of some related terms to the concept of financial toxicity.
Table 4 - Related Terms, Definition, and Relationship to Financial Toxicity Term Definition Comparison to Financial Toxicity Financial/economic burden “A relatively objective measure of personal financial status, defined as the ratio of total out-of-pocket spending on health-related costs (medical and nonmedical expenses) to total household income”9(p3) An attribute of financial toxicity Financial/economic distress “A subjective measure of the impact of financial burden on patient well-being; captures the affective experience and reflects the extent of worry, anxiety, or anguish about financial burden, experienced, or anticipated”36(p3); “refers to the emotional effects of high cancer costs including worry about one’s financial future and distress over increased financial toxicity”28 An attribute of financial toxicity Financial/economic hardship “Difficulty one might experience in attempting to secure financial resources; can be expressed in domains such as finances, health, and food (eg, difficulty paying bills, ongoing financial stress, medication reduction to reduce cost, food insecurity)”36(p3) Financial hardships are also an attribute of financial toxicity. Has been used synonymously with financial burden Financial/economic stress “The psychological burden of illness-related expenditures”25 A surrogate term of financial/economic distress, and an attribute of financial toxicity Financial/economic strain “A subjective measure characterizing how an individual perceives his or her overall economic resources relative to obligations and needs”45 Can be a measure, or aspect, of financial hardship; or synonymous within financial burden, thus is an attribute Financial/economic well-being An overall assessment of one’s financial status46 Antonym; financial toxicity is the absence of financial well-beingAntecedents include events or themes that are essential for the concept to occur (Figure 2).16 Antecedents for financial toxicity in AYA cancer survivors included a cancer diagnosis and cancer treatment,47 regardless of treatment modality (eg, chemotherapy, radiation, surgery).13,47
Figure 2:Antecedents, attributes, and consequences of financial toxicity in AYAs with cancer. The arrow from “consequences” to “antecedents” illustrates that the consequences of a primary cancer diagnosis would become antecedents in the event of recurrence or progression. Abbreviation: OOP, out-of-pocket.
Another antecedent included the theme “precancer financial status.” Adolescents and young adults with cancer reported the diagnosis as being unfair and unexpected in relation to their life course and a shock to their financial state.22 For many AYAs, this was the first time they were dealing with a major illness requiring frequent interaction with the healthcare system.25 Exceptions might have included AYAs who work in healthcare and thus have better understanding, albeit from a different perspective. Financial status included preillness employment, insurance coverage, out-of-pocket nonmedical costs (eg, student loans, credit card debt, rent), financial resources with monetary value (eg, paid time off, assets that can be liquidated to raise money), and financial and health insurance literacy. Limited sources of social and financial support within the environment prior to one’s cancer diagnosis and lack of access to age-based social safety nets as compared with some older adults were also potential causes of financial toxicity.35 Although other sociodemographic variables are known to exacerbate risk of financial toxicity (including male sex and lower education level), they were not essential for it to occur.
AttributesAttributes refer to common characteristics of financial toxicity that emerge from the way in which it manifests in real-world conditions (Figure 2).16 We identified 2 overarching attributes of financial toxicity for AYAs during the acti
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