The crippling financial toxicity of cancer in the United States

Collado, L.; Brownell, Isaac

doi:10.1080/15384047.2019.1632132

Cited by 21 publications

(19 citation statements)

References 16 publications

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“…Financial toxicity is a side effect of cancer treatment, which describes the financial burden experienced by cancer patients, who may find it difficult to afford their treatment. Some authors [ 1 ] define it as the financial burden and the consequences experienced by cancer patients, even those who have private health insurance, who are unable to pay for treatment and often use their savings, change their lifestyle, acquire borrowed money to pay with costs and often declare bankruptcy.…”

Section: Introductionmentioning

confidence: 99%

Validation of the comprehensive score for financial toxicity for Brazilian culture

Nogueira¹,

Koller²,

Marcondes³

et al. 2020

ecancer

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Financial toxicity is a side effect of cancer treatment showing the financial burden experienced by cancer patients for funding their treatment. An instrument for its evaluation can contribute towards the creation of coping strategies. In Brazil, a developing country, cancer patients certainly feel the effects of this serious adverse event, however, the discussion on the theme and research concerning these issues is scarce and an instrument for evaluation can help in the promotion of coping strategies. Thus, the study objective was to: 1) translate and adapt the COmprehensive Score for financial Toxicity (COST) questionnaire to Brazilian culture and 2) evaluate the COST psychometric properties in Brazil. Thus, a methodological study was developed in two stages. In the first stage, the translation and cross-cultural adaptation were performed, and in the second stage, two groups of participants were recruited to evaluate the psychometric properties. In the first stage, 21 individuals participated, including translators and cancer patients, and in the second stage, 126 patients participated who were undergoing cancer treatment. For validation, exploratory factor analysis (EFA), confirmatory factor analysis (CFA) and Cronbach’s alpha coefficient were performed to verify internal consistency. For the first stage’s outcome, the pre-test Cronbach’s alpha was 0.83. The EFA and CFA carried out in the second stage of the study revealed that the COST Brazilian version measures a single construct with a value of—χ2/gl = 179.78, comparative fit index = 0.00, Parsimony goodness of fit index = 0.302, root mean square error of approximation = 1.196 and p-value of close fit = 0.000. When comparing the average of the COST score and the standard deviation of the two samples, the significance value was p = 0.001. Therefore, it is possible to confirm that the COST is a valid and reliable questionnaire to measure the financial toxicity of cancer patients in Brazil.

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Section: Introductionmentioning

confidence: 99%

Validation of the comprehensive score for financial toxicity for Brazilian culture

Nogueira¹,

Koller²,

Marcondes³

et al. 2020

ecancer

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“…As MCED technologies emerge, the cost of the test itself, as well as downstream costs associated with follow‐up screening, diagnostic testing, and cancer treatment, if needed, must be considered and minimized. The current cost of cancer treatment today continues to grow; it is common for patients to enter debt and borrow money or sell possessions, foreclose on homes, or drain savings to pay basic medical bills 45‐47 . Recent data show that African American patients are at an even greater increased risk of financial toxicity and are being denied insurance because of cancer 48 .…”

Section: Framing the Futurementioning

confidence: 99%

“…The current cost of cancer treatment today continues to grow; it is common for patients to enter debt and borrow money or sell possessions, foreclose on homes, or drain savings to pay basic medical bills. [45][46][47] Recent data show that African American patients are at an even greater increased risk of financial toxicity and are being denied insurance because of cancer. 48 Cancer advocacy organizations must closely monitor patient experiences regarding the reallife cost of care and raise awareness of race inequality in affordability of cancer screening and treatment so that the cost of MCED does not exacerbate existing inequalities in cancer control and outcomes.…”

Section: Affordabilitymentioning

confidence: 99%

Patient engagement and advocacy considerations in development and implementation of a multicancer early detection program

Schear

Hoyos

Davis

et al. 2022

Cancer

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BRIEF BACKGROUNDCollaboration with organizations that advocate for patients with cancer is a critical step in actively partnering with patients and embedding patient engagement in cancer-related research and practice across the cancer care continuum. As novel and potentially highly disruptive technologies are developed, like multicancer early detection (MCED)-bloodbased screening tests designed to identify the presence of more than 1 cancer-advocacy organizations are poised to ensure that patients' needs and preferences inform the development, planning, and implementation of these technologies. MCED diverges from traditional organ-based cancer screening in that it aims to detect any malignant changes throughout the body, providing for an initial screening for cancer in which positive tests would be followed by more focused diagnostic testing. Development of this approach to cancer screening, supported by sound epidemiologic and biologic reasoning, has been vigorously pursued by academic and industry scientists, and emerging performance data are promising. 1 This commentary, specific to patient engagement and advocacy considerations, is 1 of several commentaries included in this special issue of Cancer born out of a Universal Cancer Screening Summit (the Summit) hosted by the Mayo Clinic Cancer Center, the American Cancer Society, and the Union for International Cancer Control in February of 2020. The Summit was the first convening of advocacy and nongovernmental organizations (outside of the private industry developing MCED technology) to shape a global MCED strategy. Each commentary emerged from a key theme discussed at the Summit and addresses a unique aspect of MCED, including: preclinical/clinical research, regulatory approval, advocacy and patient perspectives, international considerations, clinical practice guidelines, modeling analyses to estimate health and economic outcomes, and industry engagement. These commentaries collectively offer the first frameworks for the development, validation, and clinical application, as well as advocacy, related to MCED technologies. The current commentary emerged from discussions of the critical importance of engaging patients in cancer research and development of new screening, diagnosis, and treatment technologies.The goal of this commentary is to begin a conversation about how the delivery of MCED may affect patients and communities, examining 4 domains of access to care 2,3 : acceptance, access, affordability, and accountability. We also summarize patient perspectives regarding existing screening modalities and share initial patient insights about the concept of MCED as an example of how powerful patient partnerships can be in designing health systems and services. The primary objective of this commentary is to bring visibility to the importance of including the patient voice at all stages in the development and implementation of MCED technologies.

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“…Many scientific reviews and analyses point to the impact of financial toxicity, on cancer outcomes in the United States of America and Australia. 10 , 11 , 12 , 13 While these analyses have focused mainly on adult cancer, Santacroce and Kneipp focused on the impact of financial toxicity in pediatrics and highlight the indirect impact on the affected child. 14 The Foundation has been mindful of the financial impact of a rare childhood cancer diagnosis on the family based upon the personal experience of the founding directors.…”

Section: Data and Observations From Enrollment Recordsmentioning

confidence: 99%

A review of Leila Rose Foundation support for families affected by rare childhood cancer in Australia over the past decade

Sutherland¹,

Chow²,

Chow

et al. 2021

Cancer Reports

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Background The Leila Rose Foundation (“the Foundation”) was established in April 2011, to address financial toxicity as well as the gaps in knowledge and support for families affected by a rare childhood cancer diagnosis in Australia. Aim The aim of this brief report is to analyze the diagnostic trends surrounding the rare cancer diagnoses for patients referred to the Foundation over the past decade and to present case studies evaluating the role of the Foundation's Family Support Coordinator in providing tailored, individualized support for families. Methods Eligibility for family support is restricted to children ≤ 14 years of age at diagnosis with a cancer that has an incidence less than 5% of all childhood cancers in Australia as reflected by national registry data. The analysis of diagnostic trends in this report, was based upon a systematic review of enrolment records. The role of the Family Support Coordinator is presented in four different case studies. Results As at 1 November 2020, the Foundation has supported 197 families affected by rare childhood cancer. Financial support of $825,000 has been provided directly to these families. Enrollment records demonstrate that 35 patients representing 18% of all enrollments have had a unique diagnosis that has not been recorded for any other enrolled patient highlighting that these diagnoses are very rare. The most frequent diagnoses have included Medulloblastoma, Ewing's Sarcoma and Wilm's Tumor (20, 19, 19 patients respectively). The Family Support Coordinator role has provided individualized support for families which has been greatly appreciated based upon ad hoc family feedback. Conclusions Challenges remain in terms of improving outcomes for families affected by rare childhood cancer. The Foundation is committed to leaving no stone unturned and delivering its unique support services to families in order to reduce the burden caused by a rare childhood cancer diagnosis both now and in the future.

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The crippling financial toxicity of cancer in the United States

Cited by 21 publications

References 16 publications

Validation of the comprehensive score for financial toxicity for Brazilian culture

Validation of the comprehensive score for financial toxicity for Brazilian culture

Patient engagement and advocacy considerations in development and implementation of a multicancer early detection program

A review of Leila Rose Foundation support for families affected by rare childhood cancer in Australia over the past decade

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