The Women's Circle of Health Follow-Up Study: a population-based longitudinal study of Black breast cancer survivors in New Jersey

Abstract

Purpose: The Women's Circle of Health Follow-Up Study is an ongoing longitudinal study of African American/Black breast cancer survivors in New Jersey, specifically designed to evaluate the impact of obesity and related comorbidities on breast cancer survival and health-related quality-of-life in this understudied population. Here, we describe our recruitment and data collection methods and compare characteristics of the overall cohort and the subcohort with follow-up data.

Methods: Newly diagnosed breast cancer cases have been recruited into the study since 2006. Pre-diagnosis data on relevant factors and a saliva sample are collected during an in-person interview within 12 months from diagnosis. In 2013, we began active follow up by recontacting participants annually, including two home visits at approximately 2 and 3 years post-diagnosis, during which blood samples are collected. Mortality outcomes (all-cause and breast cancer-specific mortality) are ascertained through linkage with New Jersey State Cancer Registry files. We expect to assemble a cohort of over 2000 Black breast cancer survivors with at least 800 of them having detailed post-diagnosis data.

Results: Distribution of sociodemographic characteristics, body mass index, comorbidities, clinicopathologic characteristics, and treatment modalities were very similar between those in the full cohort and the subset with follow-up data and blood samples. Obesity (> 50%), hypertension (> 58%), and diabetes (22%) were common in this population.

Conclusions and implications for cancer survivors: This ongoing longitudinal study represents a unique resource to better understand breast cancer outcomes, patient-reported symptoms, and health-related quality of life among Black breast cancer survivors.

Keywords: Black women; Breast cancer; Cancer survivors; Comorbidities; Obesity; Quality of life.

Figure 1.

The Women’s Circle of Health Follow-up Study: Study design and data collection.

Figure 2.

First primary, invasive breast cancer among Non-Hispanic Black women, age 20–74 years by county (New Jersey State Cancer Registry, 2008–2013) and counties included in the Women’s Circle of Health Follow-up Study.

Figure 3.. Primary factors under consideration in the Women’s Circle of Health Follow-Up Study

Legend: Study aims to examine the impact of obesity and obesity-related related comorbidities, including the role of comorbidity management, medication use, and control, on breast cancer treatment, health-related quality of life (QoL) outcomes, obesity-related biomarkers evaluating mechanistic pathways, and survival outcomes within the context of multi-level factors that can affect breast cancer diagnosis, treatment, and outcomes among Black breast cancer survivors.

Figure 4.. Women’s Circle of Health Follow-up Study Recruitment and Follow-up: Progress as of March 2019.

^aWomen ineglible for a specific follow-up were those who have died, moved out of the NJ area, or had not yet reached their follow-up window. Across F/U 1 to F/U 4, a total of n=66 women died and n=18 moved out of the NJ area.

Figure 5.. Tumor stage and grade distribution (%) of women participating in the Women’s Circle of Health Follow-Up Study vs. all eligible in the target areas in New Jersey (as of March 2018)*

*Based on NJSCR data for Black female breast cancer diagnosed 2014–2016, age at diagnosis 30–74, without prior cancers and residing in one of the 10 counties in the study.