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, Sheila Judge Santacroce, Kira Bona, Ha Dang, Sarah Alexander, Kamala Allen, Crystal De Los Santos, Beth Fisher, Yudy Muñeton-Castaño, Olivia Ponce, Sarah Vargas, Aaron Sugalski, Lillian Sung, Susan Parsons

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Article number832
JournalBMC Health Services Research
Volume22
Issue number1
DOIs
StatePublished - Dec 2022

Keywords

  • Childhood all
  • Financial distress
  • Financial hardship
  • Financial toxicity
  • Health outcomes

ASJC Scopus subject areas

  • Health Policy

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