J Adolesc Young Adult Oncol
May 2025
Adolescent and young adult (AYA) women facing gonadotoxic cancer treatments are recommended to consider fertility preservation. However, fertility clinics are scarce in number and location. We describe geographic access to fertility clinics in a statewide cancer population.
View Article and Find Full Text PDFLower birth rates and higher pregnancy loss are observed after childhood cancer. Studies specific to adolescent and young adult (AYA) cancer rarely have information on pregnancies that do not end in live birth, fertility preservation strategies, or detailed cancer treatment information to assess these risks. To address this gap, we examined pregnancy outcomes after cancer in a cohort of 30,020 AYAs with detailed clinical records.
View Article and Find Full Text PDFJ Natl Cancer Inst
June 2025
Background: American Indians experience disparities in cancer outcomes. Little is known about the quality of end-of-life care in American Indian patients with cancer.
Methods: We retrospectively analyzed end-of-life care for North Carolina patients who died (decedents) diagnosed with any cancer between 2003 and 2018 using the Cancer Information & Population Health Resource.
Cancer Epidemiol Biomarkers Prev
December 2024
Background: Rapid growth in the number of US cancer survivors drives the need for ongoing research efforts to improve outcomes and experiences after cancer. In this study, we describe the University of North Carolina (UNC) Cancer Survivorship Cohort, a medical center-based cohort of adults with cancer that integrates medical record-abstracted cancer information, patient-reported outcomes, and biological specimens.
Methods: Participants ages 18+ were recruited from UNC oncology clinics between April 2010 and August 2016.
J Womens Health (Larchmt)
January 2025
Background: Population-based linked datasets are vital to generate catchment area and population health research. The novel Cancer Information and Population Health Resource (CIPHR) links statewide cancer registry data, public and private insurance claims, and provider- and area-level data, representing more than 80% of North Carolina's large, diverse population of individuals diagnosed with cancer. This scoping review of articles that used CIPHR data characterizes the breadth of research generated and identifies further opportunities for population-based health research.
View Article and Find Full Text PDFJNCI Cancer Spectr
September 2024
Background: The University of North Carolina at Chapel Hill Lineberger Comprehensive Cancer Center has developed a novel data resource, the Cancer Information and Population Health Resource (CIPHR), for conducting catchment area evaluation and cancer population health research that links the North Carolina Central Cancer Registry (NCCCR) to medical and pharmacy claims data from Medicare, Medicaid, and private plans operating within North Carolina. This study's aim was to describe the CIPHR data and provide examples of potential cohorts available in those data.
Methods: We present the underlying populations included in the NCCCR and claims data before linkage and demonstrate estimated sample sizes when these data are linked and commonly used insurance enrollment criteria are applied.
Cancer Epidemiol Biomarkers Prev
September 2024
Background: Fertility counseling is recommended for adolescent and young adult women facing gonadotoxic cancer therapy. However, fertility care is subspecialized medical care offered at a limited number of institutions, making geographic access a potential barrier to guideline-concordant care. We assessed the relationship between geographic access and receipt of fertility counseling among adolescent and young adult women with cancer.
View Article and Find Full Text PDFClin Lymphoma Myeloma Leuk
September 2024
Cancer Epidemiol Biomarkers Prev
June 2024
Background: The American Indian (AI) population in North Carolina has limited access to the Indian Health Service. Consequently, cancer burden and disparities may differ from national estimates. We describe the AI cancer population and examine AI-White disparities in cancer incidence and mortality.
View Article and Find Full Text PDFPurpose: Multiple myeloma (MM) is a prevalent hematologic malignancy in older adults, who often experience physical disability, increased health care usage, and reduced treatment tolerance. Home health (HH) services are frequently used by this group, but the relationship between disability, HH use, and MM treatment receipt is unclear. This study examines the connections between disability, treatment receipt, and survival outcomes in older adults with newly diagnosed MM using a nationwide data set.
View Article and Find Full Text PDFBackground: Inequities in guideline-concordant treatment receipt contribute to worse survival in Black patients with breast cancer. Inequity-reduction interventions (eg, navigation, bias training, tracking dashboards) can close such treatment gaps. We simulated the population-level impact of statewide implementation of inequity-reduction interventions on racial breast cancer inequities in North Carolina.
View Article and Find Full Text PDFJNCI Cancer Spectr
January 2024
Background: Previous studies of hospital-based patients with metastatic melanoma suggest sociodemographic factors, including insurance type, may be associated with the receipt of systemic treatments.
Objectives: To examine whether insurance type is associated with the receipt of systemic treatment among patients with melanoma in a broad cohort of patients in North Carolina.
Methods: We conducted a retrospective cohort study between 2011 and 2017 of patients with stages III-IV melanoma using data from the North Carolina Central Cancer Registry linked to Medicare, Medicaid, and private health insurance claims across the state.
There are >1.9 million survivors of adolescent and young adult cancers (AYA, diagnosed at ages 15-39) living in the U.S.
View Article and Find Full Text PDFCancer Epidemiol Biomarkers Prev
May 2023
Background: Hepatocellular carcinoma (HCC) surveillance is underutilized, with <25% of individuals with cirrhosis receiving surveillance exams as recommended. The epidemiology of cirrhosis and HCC in the United States has also shifted in recent years, but little is known about recent trends in surveillance utilization. We characterized patterns of HCC surveillance by payer, cirrhosis etiology, and calendar year in insured individuals with cirrhosis.
View Article and Find Full Text PDFBackground: Treatment delays affect breast cancer survival and constitute poor-quality care. Black patients experience more treatment delay, but the relationship of geography to these disparities is poorly understood.
Methods: We studied a population-based, retrospective, observational cohort of patients with breast cancer in North Carolina between 2004 and 2017 from the Cancer Information and Population Health Resource, which links cancer registry and sociodemographic data to multipayer insurance claims.
Purpose: New therapies including oral anticancer agents (OAAs) have improved outcomes for patients with metastatic renal cell carcinoma (mRCC). However, little is known about the quality of end-of-life (EOL) care and systemic therapy use at EOL in patients receiving OAAs or with mRCC.
Methods: We retrospectively analyzed EOL care for decedents with mRCC in two parallel cohorts: (1) patients (RCC diagnosed 2004-2015) from the University of North Carolina's Cancer Information and Population Health Resource (CIPHR) and (2) patients (diagnosed 2007-2015) from SEER-Medicare.
Purpose: Cancer is a major reason for concurrent prescription of opioids with other sedating medications-particularly benzodiazepines and gabapentinoids-yet population-based assessments of the extent and predictors of concurrent prescribing among clinically and demographically diverse patients with cancer are lacking.
Methods: We conducted a retrospective cohort study of patients with non-metastatic cancer using North Carolina cancer registry data linked with Medicare and private insurance claims (2013-2016). We used modified Poisson regression to assess associations of patient characteristic with adjusted relative risk (aRR) of new concurrent prescribing of opioids with benzodiazepines or gabapentinoids after diagnosis.
Purpose: Tobacco use prevalence is higher in rural compared to urban settings, possibly due to differences in tobacco availability, including the option to purchase food and other essential items in stores that do not sell tobacco (tobacco-free food retailers). The goal of this research is to determine whether tobacco-free food retailer availability varies by urbanicity/rurality.
Methods: Using the 2017 National Establishment Time-Series database, we identified food retailers across all census tracts containing food retailers in the United States (n = 66,053).
Purpose: In an era of rapid expansion of FDA approvals for oral anticancer agents (OAAs), it is important to understand the factors associated with survival among real-world populations, which include groups not well-represented in pivotal clinical trials of OAAs, such as the elderly, racial minorities, and medically complex patients. Our objective was to evaluate patient- and provider-level characteristics' associations with mortality among a multi-payer cohort of metastatic renal cell carcinoma (mRCC) patients who initiated OAAs.
Methods: This retrospective cohort study was conducted using data from the North Carolina state cancer registry linked to multi-payer claims data for the years 2004 to 2015.
Clin Genitourin Cancer
August 2022
Introduction: Contemporary testis cancer management requires fastidious adherence to clinical guidelines and care principles, especially for those pursuing active surveillance (AS). However, real-world testis cancer care remains largely undescribed. Accordingly, we sought to assess the rigor of evaluation and monitoring among men with testis cancer.
View Article and Find Full Text PDFCancer Epidemiol Biomarkers Prev
May 2022
Background: Financial hardship among adolescents and young adults (AYA) with cancer who receive gonadotoxic treatments may be exacerbated by the use of fertility services. This study examined whether AYA women with cancer who used fertility preservation had increased financial hardship.
Methods: AYA women with cancer in North Carolina and California completed a survey in 2018-2019.