Five-year relative survival rates for Hodgkin lymphoma (HL) are excellent at ~90%, yet Black and Hispanic patients have worse survival outcomes than White patients across all age groups (children, young adults, and older adults). HL’s age distribution and generally high cure rates offer a paradigm to study cancer inequities across the lifespan, since each age group receives distinct initial and salvage therapy and late effects are associated with increased mortality. Specific types of treatment are associated with improved survival, such as receiving combined-modality therapy initially, and undergoing stem cell transplantation at relapse – which is less likely to occur for Black and Hispanic patients relative to White patients. There is an association between social determinants of health (SDOH), treatment receipt, and survivorship care, and, each age group is influenced by factors. What remains missing is a comprehensive list of key social characteristics for each age group associated with variation in treatment, survival, and survivorship in Black and Hispanic HL patients. Prior analyses were limited by 1) level of granularity with respect to SDOH and 2) incomplete determination of treatments received for and after relapse, especially stem cell transplant. The National Patient-Centered Outcomes Research Network (PCORnet) allows access to longitudinal patient-level electronic medical record and claims data for participating sites. The PCORnet data will be combined with data from the Center for International Blood and Marrow Transplantation Research (CIBMTR; providing high-quality clinical and stem cell transplant data) to overcome those previous challenges.
Motivated by the above gaps, our long-term goal is to reduce survival disparities for Black and Hispanic patients with HL. The overall objective for this proposal is to determine how SDOH factors relate with poor HL survival outcomes in 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, including OneFlorida+ and the CIBMTR. The rationale for the proposed research is that identification of SDOH that are predictive of worse HL survival among Black and Hispanic patients will provide a conceptual framework upon which to base the design of targeted interventions.
Study Population: Individuals with at least two encounters on two different dates with a diagnosis of Hodgkin lymphoma (ICD10, C81*; ICD9, 201*). The encounters with a diagnosis with Hodgkin lymphoma can come from the diagnosis, condition, or tumor registry (if applicable) tables.
Aim 1: Examine differences in the receipt and quality of HL treatment for initial diagnosis or relapse by race, ethnicity, and socioeconomic factors for those <18, 18-39, and ≥40 years of age for:
- Both up-front and salvage or post-relapse purposes, particularly with stem cell transplant.
- Overall and disease-specific survival.
Aim 2: Examine the receipt and quality of survivorship care by race, ethnicity, and socioeconomic factors for those <18, 18-39, and ≥40 years of age for:
- Adherence to recommended age adjacent recommended survivorship care due to their HL diagnosis or treatment exposure (e.g., echocardiogram for those treated with anthracyclines and/or chest radiotherapy, mammography for breast cancer screening, annual survivorship care visits).
Aim 3: Evaluate patient beliefs, concerns, and attitudes regarding their upfront, salvage, and survivorship care by using qualitative interviews bolstered by strategic partnerships. We will understand the treatment and survivorship decision-making process for patients and families through their lived experiences in a sample enriched in Black and Hispanic representation.