Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States
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 influ...
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| Format: | Article |
| Language: | English |
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BMC
2022-06-01
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| Series: | BMC Health Services Research |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12913-022-08201-0 |
| _version_ | 1828468843816681472 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Melissa Beauchemin |
| collection | DOAJ |
| description | 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 . |
| first_indexed | 2024-12-11T04:30:13Z |
| format | Article |
| id | doaj.art-5e6371e18b0d47b4999f5800a61a2bde |
| institution | Directory Open Access Journal |
| issn | 1472-6963 |
| language | English |
| last_indexed | 2024-12-11T04:30:13Z |
| publishDate | 2022-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Health Services Research |
| spelling | doaj.art-5e6371e18b0d47b4999f5800a61a2bde2022-12-22T01:20:54ZengBMCBMC Health Services Research1472-69632022-06-0122111310.1186/s12913-022-08201-0Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United StatesMelissa Beauchemin0Sheila Judge Santacroce1Kira Bona2Ha Dang3Sarah Alexander4Kamala Allen5Crystal De Los Santos6Beth Fisher7Yudy Muñeton-Castaño8Olivia Ponce9Sarah Vargas10Aaron Sugalski11Lillian Sung12Susan Parsons13Columbia University School of NursingSchool of Nursing, University of North Carolina Chapel HillDepartment of Pediatric Oncology, Division of Hematology/Oncology, Boston Children’s Hospital, Harvard Medical School, Dana-Farber Cancer InstituteDepartment of Population and Public Health Sciences, Keck School of Medicine of USCHospital for Sick ChildrenDepartment of Population and Public Health Sciences, Keck School of Medicine of USCDriscoll Children’s HospitalChildren’s Healthcare of AtlantaDana-Farber Cancer InstituteChildren’s Oncology GroupChildren’s Oncology GroupUniversity of Texas Health Science Center at San AntonioHospital for Sick ChildrenTufts Medical Center, Institute for Clinical Research and Health Policy StudiesAbstract 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 .https://doi.org/10.1186/s12913-022-08201-0Childhood allFinancial distressFinancial hardshipFinancial toxicityHealth outcomes |
| spellingShingle | 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 Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States BMC Health Services Research Childhood all Financial distress Financial hardship Financial toxicity Health outcomes |
| title | Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States |
| title_full | Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States |
| title_fullStr | Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States |
| title_full_unstemmed | Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States |
| title_short | Rationale and design of Children’s Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States |
| title_sort | rationale and design of children s oncology group cog study accl20n1cd financial distress during treatment of acute lymphoblastic leukemia in the united states |
| topic | Childhood all Financial distress Financial hardship Financial toxicity Health outcomes |
| url | https://doi.org/10.1186/s12913-022-08201-0 |
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