Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States

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Abstract

Background

The study purpose is to describe trajectories of financial distress for parents of children (ages 1–14.9 years) with newly diagnosed acute lymphoblastic leukemia (ALL). The secondary aim is to identify multilevel factors (child, parent, household, treating institution) that influence change in financial distress over time.

Methods

The study uses a prospective cohort design, repeated measurements, and mixed methods. The settings are Children’s Oncology Group (COG) institutions participating in the National Cancer Institute Community Oncology Research Program (NCORP). Eligible participants are English- and/or Spanish-speaking parents or legal guardians (hereafter “parents”) of index children. Parents are asked to complete a survey during their child’s induction (T1) and maintenance therapy (T2), and near treatment completion (T3). Study surveys include items about (a) the child’s cancer and clinical course, (b) parental socio-economic status, financial distress and financial coping behaviors, and (c) household material hardships. At least 15 parents will be invited to participate in an optional semi-structured interview. NCORP institutions that enroll at least one parent must complete an annual survey about institution resources that could influence parental financial distress.

Discussion

The results will inform future interventions to mitigate financial distress for parents of children diagnosed with ALL and could be instructive beyond this disease group.

Trial registration

This trial was initially registered with the NCI Clinical Trial Reporting Program ID: NCI-2021–03,567 on June 16, 2021. The study can be found on clinicaltrials.gov, Identifier NCT04928599.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-022-08201-0.

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Most cited references 56

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Back-Translation for Cross-Cultural Research

R W Brislin (1970)

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The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience.

S Zafar, Jeffrey M Peppercorn, Deborah Schrag … (2013)

Cancer patients carry rising burdens of health care-related out-of-pocket expenses, and a growing number of patients are considered "underinsured." Our objective was to describe experiences of insured cancer patients requesting copayment assistance and to describe the impact of health care expenses on well-being and treatment. We conducted baseline and follow-up surveys regarding the impact of health care costs on well-being and treatment among cancer patients who contacted a national copayment assistance foundation along with a comparison sample of patients treated at an academic medical center. Among 254 participants, 75% applied for drug copayment assistance. Forty-two percent of participants reported a significant or catastrophic subjective financial burden; 68% cut back on leisure activities, 46% reduced spending on food and clothing, and 46% used savings to defray out-of-pocket expenses. To save money, 20% took less than the prescribed amount of medication, 19% partially filled prescriptions, and 24% avoided filling prescriptions altogether. Copayment assistance applicants were more likely than nonapplicants to employ at least one of these strategies to defray costs (98% vs. 78%). In an adjusted analysis, younger age, larger household size, applying for copayment assistance, and communicating with physicians about costs were associated with greater subjective financial burden. Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients. Future research should investigate coverage thresholds that minimize adverse financial outcomes and identify cancer patients at greatest risk for financial toxicity.

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Household catastrophic health expenditure: a multicountry analysis.

Christopher Murray, Lewis Evans, J Klavus … (2003)

Health policy makers have long been concerned with protecting people from the possibility that ill health will lead to catastrophic financial payments and subsequent impoverishment. Yet catastrophic expenditure is not rare. We investigated the extent of catastrophic health expenditure as a first step to developing appropriate policy responses. We used a cross-country analysis design. Data from household surveys in 59 countries were used to explore, by regression analysis, variables associated with catastrophic health expenditure. We defined expenditure as being catastrophic if a household's financial contributions to the health system exceed 40% of income remaining after subsistence needs have been met. The proportion of households facing catastrophic payments from out-of-pocket health expenses varied widely between countries. Catastrophic spending rates were highest in some countries in transition, and in certain Latin American countries. Three key preconditions for catastrophic payments were identified: the availability of health services requiring payment, low capacity to pay, and the lack of prepayment or health insurance. People, particularly in poor households, can be protected from catastrophic health expenditures by reducing a health system's reliance on out-of-pocket payments and providing more financial risk protection. Increase in the availability of health services is critical to improving health in poor countries, but this approach could raise the proportion of households facing catastrophic expenditure; risk protection policies would be especially important in this situation.

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Author and article information

Contributors

Melissa Beauchemin:

ORCID: http://orcid.org/0000-0003-4058-1586

mmp2123@cumc.columbia.edu

Journal

Journal ID (nlm-ta): BMC Health Serv Res

Journal ID (iso-abbrev): BMC Health Serv Res

Title: BMC Health Services Research

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6963

Publication date (Electronic): 28 June 2022

Publication date PMC-release: 28 June 2022

Publication date Collection: 2022

Volume: 22

Electronic Location Identifier: 832

Affiliations

[1 ]GRID grid.21729.3f, ISNI 0000000419368729, Columbia University School of Nursing, ; New York, NY USA

[2 ]GRID grid.21729.3f, ISNI 0000000419368729, Herbert Irving Comprehensive Cancer Center, , Columbia University Irving Medical Center, ; New York, NY USA

[3 ]GRID grid.10698.36, ISNI 0000000122483208, School of Nursing, , University of North Carolina Chapel Hill, ; Chapel Hill, NC USA

[4 ]GRID grid.410711.2, ISNI 0000 0001 1034 1720, Lineberger Comprehensive Cancer Center, , University of North Carolina, ; Chapel Hill, NC USA

[5 ]GRID grid.2515.3, ISNI 0000 0004 0378 8438, Department of Pediatric Oncology, Division of Hematology/Oncology, , Boston Children’s Hospital, Harvard Medical School, Dana-Farber Cancer Institute, ; Boston, MB USA

[6 ]GRID grid.42505.36, ISNI 0000 0001 2156 6853, Department of Population and Public Health Sciences, , Keck School of Medicine of USC, ; Los Angeles, CA USA

[7 ]Hospital for Sick Children, Toronto, ON USA

[8 ]GRID grid.414149.d, ISNI 0000 0004 0383 4967, Driscoll Children’s Hospital, ; Corpus Christi, TX USA

[9 ]GRID grid.428158.2, ISNI 0000 0004 0371 6071, Children’s Healthcare of Atlanta, ; Atlanta, GA USA

[10 ]GRID grid.65499.37, ISNI 0000 0001 2106 9910, Dana-Farber Cancer Institute, ; Boston, MA USA

[11 ]GRID grid.428204.8, ISNI 0000 0000 8741 3510, Children’s Oncology Group, ; Monrovia, CA USA

[12 ]GRID grid.267309.9, ISNI 0000 0001 0629 5880, University of Texas Health Science Center at San Antonio, ; San Antonio, TX USA

[13 ]GRID grid.67033.31, ISNI 0000 0000 8934 4045, Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, ; Boston, MA USA

Author information

Melissa Beauchemin http://orcid.org/0000-0003-4058-1586

Article

Publisher ID: 8201

DOI: 10.1186/s12913-022-08201-0

PMC ID: 9237978

SO-VID: da9cd3d0-3378-400e-8eac-49c4b9b0d505

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 12 May 2022

Date accepted : 15 June 2022

Funding

Funded by: FundRef http://dx.doi.org/10.13039/100011541, Division of Cancer Epidemiology and Genetics, National Cancer Institute;

Award ID: 5UG1CA189955

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ScienceOpen disciplines: Health & Social care

Keywords: childhood all,financial distress,financial hardship,financial toxicity,health outcomes

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ScienceOpen disciplines: Health & Social care

Keywords: childhood all, financial distress, financial hardship, financial toxicity, health outcomes

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Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States

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Abstract

Background

Methods

Discussion

Trial registration

Supplementary Information

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Most cited references 56

Back-Translation for Cross-Cultural Research

The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience.

Household catastrophic health expenditure: a multicountry analysis.

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Contributors

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Cited by 1

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