Determining Barriers Leading to Inferior Survival for Black and Hispanic Patients with Hodgkin Lymphoma: A Patient-Centered Study - Project Abstract Although Hodgkin lymphoma (HL) 5-year relative survival exceeds 90%, Black and Hispanic patients face inferior survival in childhood, adolescence and young adulthood (AYA), and as older adults. The gap in knowledge for the mechanism explaining inferior survival reflects (i) the inability to provide individual social factor data, (ii) the lack of postrelapse treatment data, especially stem cell transplant (SCT) data, and (iii) the omission of survivorship care as a cause. There is a critical need to identify predictors of variation in treatment and survivorship care leading to worse survival reported for Black and Hispanic patients with HL to create an evidence-based framework upon which to design interventions to improve outcomes of HL patients of all ages. This proposal’s overall objective is to determine how social factors may explain poorer HL survival outcomes for Black and Hispanic patients. Our central hypothesis is that key and distinct social factors influence survival for each age group, and these will be identified through the novel linkage of comprehensive longitudinal databases: the Patient-Centered Outcomes Research Network (PCORnet, which provides longitudinal patient- level electronic medical record and administrative claims data) and the Center for International Blood and Marrow Transplantation Research (CIBMTR, which provides high-quality clinical and SCT data). The central hypothesis will be tested by pursuing three specific aims in this mixed-methods study: 1) Examine differences in the receipt and quality of HL treatment for initial diagnosis and relapse for those who have relapsed; 2) Examine the receipt and quality of survivorship care; and 3) Examine diverse patients’ decision-making experiences with upfront, relapse, and survivorship care using in-depth interviews with survivors recruited through strategic partnerships. For Aims 1 and 2, a cohort of more than 26,000 patients diagnosed between 2010 and 2023, representative of the HL population by race, ethnicity, social factors, and age, will be evaluated for differences in (i) anticancer therapy and (ii) post-therapy survivorship care by social factors stratified by the aforementioned subgroups. For Aim 3, semi-structured, in-depth interviews of a sample of HL survivors and caregivers enriched in Black and Hispanic representation will be conducted to understand the treatment and survivorship decision-making process for patients and families through their lived experiences. The research proposed is innovative because (i) the PCORnet and CIBMTR data linkage confronts knowledge gaps regarding longitudinal care and postrelapse treatment and (ii) the proposed partnership with national patient advocacy organizations for Aim 3 accrual achieves the intended representation of both Black and Hispanic patients and AYAs. The proposed research is significant because it is expected to provide strong scientific justification for informing policy and developing interventions to bridge inequities in care and outcomes borne by Black and Hispanic survivors, particularly as more than 220,000 HL survivors live in the US today.
