Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jun 28;22(1):832.
doi: 10.1186/s12913-022-08201-0.

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

Melissa Beauchemin  1   2 , Sheila Judge Santacroce  3   4 , Kira Bona  5 , Ha Dang  6 , Sarah Alexander  7 , Kamala Allen  6 , Crystal De Los Santos  8 , Beth Fisher  9 , Yudy Muñeton-Castaño  10 , Olivia Ponce  11 , Sarah Vargas  11 , Aaron Sugalski  12 , Lillian Sung  7 , Susan Parsons  13
Affiliations

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

Melissa Beauchemin et al. BMC Health Serv Res. .

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 .

Keywords: Childhood all; Financial distress; Financial hardship; Financial toxicity; Health outcomes.

PubMed Disclaimer

Conflict of interest statement

None.

Figures

Fig. 1
Fig. 1
Model of financial toxicity during treatment for Acute Lymphoblastic Leukemia
Fig. 2
Fig. 2
Study Design Schema for ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Zafar SY, Peppercorn JM, Schrag D, Taylor DH, Goetzinger AM, Zhong X, et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist. 2013;18(4):381–390. - PMC - PubMed
    1. YousufZafar S. Financial toxicity of cancer care: it’s time to intervene. J Natl Cancer Inst. 2015;108(5):djv370. - PubMed
    1. Altice CK, Banegas MP, Tucker-Seeley RD, Yabroff KR. Financial hardships experienced by cancer survivors: a systematic review. J Natl Cancer Inst. 2017;109(2):1–17. - PMC - PubMed
    1. Santacroce SJ, Kneipp SM. Influence of pediatric cancer–related financial burden on parent distress and other stress-related symptoms. Pediatr Blood Cancer. 2020;67(3):e28093. - PubMed
    1. Santacroce SJ, Killela MK, Kerr G, Leckey JA, Kneipp SM. Fathers’ psychological responses to pediatric cancer-induced financial distress. Pediatr Blood Cancer. 2020;67(6):e28281. - PMC - PubMed

Associated data