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

Background: Based on previous reports of disparities in financial burden following a cancer diagnosis, this study aims to characterize mechanisms of disparities experienced by caregivers of children with cancer, including the impact of work flexibility and social support. Methods:Cross-sectional survey (in English or Spanish) of caregivers of children with cancer that assessed household material hardship (HMH), financial toxicity, and income change.Results: Of 156 caregivers surveyed, 32% were Hispanic and 32% were low income.Hispanic caregivers were more likely to report HMH and financial toxicity compared to non-Hispanic White and Asian (HMH: 57% vs. 21% vs. 19%, p < .001; financial toxicity: 73% vs. 52% vs. 53%, p = .07). Low-and middle-income caregivers were more likely to experience HMH and financial toxicity compared to high-income caregivers (HMH: 68% low vs. 38% middle vs. 8.7% high, p < .001; financial toxicity: 81% vs. 68% vs. 44%, p < .001). All income categories demonstrated significant increases in HMH 1 year after diagnosis. Seventeen percent reported more than 40% income loss, more of whom were low income than high income (27% vs. 12%, p = .20). Work flexibility and social support were associated with income and financial toxicity. Conclusion:HMH, financial toxicity, and income loss are prevalent after a child's cancer diagnosis, suggesting that screening should be incorporated into routine care. This financial burden disproportionately affects low-income and Hispanic caregivers. Further research is needed to elucidate the roles of work flexibility and social support, how safety net services are utilized by families, and how best to support families with HMH.

Section: Discussionmentioning

confidence: 99%

Disparities in household material hardship, financial toxicity, and income loss in pediatric cancer

Evans

Lin

Sanchez-Alvarez

et al. 2023

“…COG nurses also conduct and lead research in collaboration with other COG disease and domain committees and investigators, including CCL, 53,54 YI, 55 outcomes/survivorship, 56 adolescent/young adult (AYA), 57 ALL, 52,58–60 myeloid leukemia, 61 neuroblastoma, 62 and central nervous system tumor 63,64 committees.…”

Section: Organizational Structure Of the Nursing Disciplinementioning

confidence: 99%

Children's Oncology Group 2023 blueprint: Nursing discipline

Zupanec,

Herriage,

Landier

2023

In contrast to other Children's Oncology Group (COG) committees, the COG nursing discipline is unique in that it provides the infrastructure necessary for nurses to support COG clinical trials and implements a research agenda aimed at scientific discovery. This hybrid focus of the discipline reflects the varied roles and expertise within pediatric oncology clinical trials nursing that encompass clinical care, leadership, and research. Nurses are broadly represented across COG disease, domain, and administrative committees, and are assigned to all clinically focused protocols. Equally important is the provision of clinical trials‐specific education and training for nurses caring for patients on COG trials. Nurses involved in the discipline's evidence‐based practice initiative have published a wide array of systematic reviews on topics of clinical importance to the discipline. Nurses also develop and lead research studies within COG, including stand‐alone studies and aims embedded in disease/ treatment trials. Additionally, the nursing discipline is charged with responsibility for developing patient/family educational resources within COG. Looking to the future, the nursing discipline will continue to support COG clinical trials through a multifaceted approach, with a particular focus on patient‐reported outcomes and health equity/disparities, and development of interventions to better understand and address illness‐related distress in children with cancer.

“…The study builds on the conceptual framework, developed by co‐PI, Sheila Santacroce, of factors associated with financial toxicity, 15 with the goal of identifying potentially modifiable factors for future interventions (Figure 3). This prospective, observational study was designed to follow English‐ and Spanish‐speaking parent participants longitudinally with three planned assessments, marking the different phases of ALL treatment 16 (Figure 4). The study co‐chairs also conducted linguistic translation and cultural adaptation of the primary outcome measure (the Personal Financial Wellness Scale 17 [PFW] formerly known as In‐Charge) to ensure the study would be accessible to Spanish‐speaking parents, a population that to date has largely been excluded from research on financial toxicity and financial distress and posited to be at heightened risk based on what is known about the contributions of social determinants to health inequities.…”

Section: The Pediatric Portfoliomentioning

confidence: 99%

“…The study builds on the conceptual framework, developed by co-PI, Sheila Santacroce, of factors associated with financial toxicity, 15 with the goal of identifying potentially modifiable factors for future interventions (Figure 3). This prospective, observational study was designed to follow English-and Spanish-speaking parent participants longitudinally with three planned assessments, marking the different phases of ALL treatment 16 (Figure 4). The study co-chairs also conducted linguistic translation and cultural adaptation of the primary outcome measure (the Personal Financial Wellness Scale 17 [PFW] formerly known as In-…”

Section: The Pediatric Portfoliomentioning

confidence: 99%

Children's Oncology Group 2023 blueprint for research: Cancer care delivery research

Parsons,

Beauchemin,

Dupuis

et al. 2023

Self Cite

The National Cancer Institute (NCI) has a 40‐year history of initiatives to encourage the participation of community oncology sites into clinical trials research and clinical care. In 2014, the NCI re‐organized to form the NCI Community Oncology Research Program (NCORP) network across seven research bases, including the Children's Oncology Group (COG), and numerous community sites. The COG portfolio for Cancer Care Delivery Research (CCDR), mirroring the larger NCORP network, has included two studies addressing guideline congruence, as an important marker of quality cancer care, and another focusing on financial toxicity, addressing the pervasive problems of healthcare cost. CCDR is a cross‐cutting field that frequently examines intersectional aspects of healthcare delivery. With that in mind, we explicitly define domains of CCDR to propel our research agenda into the next phase of the NCORP CCDR program while acknowledging the complex and dynamic fields of clinical care, policy level decisions, research findings, and needs of communities served by the NCORP network that will inform the subsequent research questions. To ensure programmatic success, we will engage a broad interdisciplinary group of investigators and clinicians with expertise and dedication to community oncology and the populations they serve.