Kristin Z. Black

Birth outcomes among adolescent and young adult cancer survivors

Importance Cancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors. Objective To compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis. Design, Setting, and Participants The North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery. Main Outcomes and Measures Prevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score. Results Overall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups. Conclusions and Relevance Live births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

Beyond Incentives for Involvement to Compensation for Consultants: Increasing Equity in CBPR Approaches

Background: Community-based participatory research (CBPR) strives for equitable collaboration among community and academic partners throughout the research process. To build the capacity of academia to function as effective research partners with communities, the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the University of North Carolina at Chapel Hill (UNC-CH)’s Clinical and Translational Sciences Award (CTSA), developed a community engagement consulting model. This new model harnesses the expertise of community partners with CBPR experience and compensates them equitably to provide technical assistance to community–academic research partnerships. Objectives: This paper describes approaches to valuing community expertise, the importance of equitable compensation for community partners, the impact on the community partners, opportunities for institutional change, and the constraints faced in model implementation. Methods: Community Experts (CEs) are independent contractor consultants. CEs were interviewed to evaluate their satisfaction with their engagement and compensation for their work. Lessons Learned: (1) CEs have knowledge, power, and credibility to push for systems change. (2) Changes were needed within the university to facilitate successful consultation to community–academic partnerships. (3) Sustaining the CE role requires staff support, continued compensation, increased opportunities for engagement, and careful consideration of position demands. (4) The role provides benefits beyond financial compensation. (5) Opportunities to gather deepened relationships within the partnership and built collective knowledge that strengthened the project. Conclusions: Leveraging CE expertise and compensating them for their role benefits both university and community. Creating a place for community expertise within academia is an important step toward equitably including the community in research.

Community-Guided Focus Group Analysis to Examine Cancer Disparities.

Background: Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers.Objectives: This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a “power analysis” of the cancer care system and 2) the development of the intervention’s training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff.Methods: Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe “pressure point encounters” or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data.Conclusions: A collaborative qualitative data analysis process strengthened the capacity of our community–medical–academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Perceived Racial/Ethnic Discrimination and Mental Health: a Review and Future Directions for Social Epidemiology

Purpose of ReviewRecent literature on racial or ethnic discrimination and mental health was reviewed to assess the current science and identify key areas of emphasis for social epidemiology. Objectives of this review were to (1) determine whether there have been advancements in the measurement and analysis of perceived discrimination, (2) identify the use of theories and/or frameworks in perceived discrimination and mental health research, and (3) assess the extent to which stress buffers are being considered and evaluated in the existing literature.Recent FindingsMetrics and analytic approaches used to assess discrimination remain largely unchanged. Theory and/or frameworks such as the stress and coping framework continue to be underused in majority of the studies. Adolescents and young adults experiencing racial/ethnic discrimination were at greater risk of adverse mental health outcomes, and the accumulation of stressors over the life course may have an aggregate impact on mental health. Some growth seems evident in studies examining the mediation and moderation of stress buffers and other key factors with the findings suggesting a reduction in the effects of discrimination on mental health.SummaryDiscrimination scales should consider the multiple social identities of a person, the context where the exposure occurs, how the stressor manifests specifically in adolescents, the historical traumas, and cumulative exposure. Life course theory and intersectionality may help guide future work. Despite existing research, gaps remain in elucidating the effects of racial and ethnic discrimination on mental health, signaling an opportunity and a call to social epidemiologists to engage in interdisciplinary research to speed research progress.

Establishing New Community-Based Participatory Research Partnerships using the Community-Based Participatory Research Charrette Model: Lessons from the Cancer Health Accountability for Managing Pain and Symptoms Study

Abstract:Background: Community-based participatory research (CBPR) is a collaborative and equitable approach to research inquiry; however, the process of establishing and maintaining CBPR partnerships can be challenging. There is an ongoing need for innovative strategies that foster partnership development and long-term sustainability. In 2010, the University of North Carolina at Chapel Hill developed a CBPR charrette model to facilitate stakeholder engagement in translational research.Objective: To describe how the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) Study leveraged the CBPR charrette process to develop and strengthen its CBPR partnership and successfully implement research objectives.Methods: Fourteen CHAMPS community, academic, and medical partners participated in the CBPR charrette. Two co-facilitators guided the charrette application process and in-person discussion of partnership strengths, needs, and challenges. Community experts (CEs) and academic experts (AEs) with extensive experience in CBPR and health disparities provided technical assistance and recommendations during the in-person charrette.Conclusions: Overall, the CHAMPS partnership benefited significantly from the charrette process. Specifically, the charrette process engendered greater transparency, accountability, and trust among CHAMPS partners by encouraging collective negotiation of project goals and implementation, roles and responsibilities, and compensation and communication structures. The process also allowed for the exploration of newly identified challenges and potential solutions with support from CEs and AEs. Furthermore, the charrette also functioned as a catalyst for capacity building among CHAMPS community, academic, and medical partners. Future studies should compare the impact of the CBPR charrette, relative to other approaches, on partnership development and process evaluation outcomes.

Abstract A43: A System-Change and Community-Based Participatory Research Approach to Understanding the Role of Informal Social Networks During the Cancer Care Journey

Background: Racial disparities in quality and completion of cancer treatment have been associated with poorer health outcomes among African Americans (AA) compared to White Americans (WA). Support from informal social networks – such as family members and friends - during the cancer care journey is critical. Yet, few studies have examined system-level factors associated with family and friend involvement in cancer care and whether system-level factors contribute to racial variations in their involvement. The purpose of this study is to investigate (a) cancer survivor perceptions on involvement of and effects from their informal social network during their cancer journey, (b) healthcare system factors that influenced the type and degree of network involvement, and (c) racial differences in survivor/network member experiences with the healthcare system during the cancer journey. Methods: Accountability for Cancer Care through Undoing Racism and Equity”, a 5-year system-change intervention trial funded by the National Cancer Institute, is a community-based participatory research (CBPR) partnership of the University of North Carolina at Chapel Hill (UNC), Greensboro Health Disparities Collaborative, and two cancer centers. ACCURE aims to reduce racial inequity in quality and completion of treatment for Stage 1-2 breast and lung cancer patients at the two partner cancer centers. As part of the formative work for this study, focus groups were conducted with Black and White early-stage breast and lung cancer survivors to understand how encounters with the healthcare system influenced their treatment experience (diagnosis through survivorship). Our racially diverse CBPR partnership developed, conducted, and analyzed focus group data from 8 focus groups with early stage breast and lung cancer survivors at the two cancer centers: 4 focus groups with AA survivors (n=12) and 4 focus groups with WA survivors (n=15). Results: Informal network member involvement was associated with barriers to care patients encountered in the cancer system; aspects of cancer care that helped to facilitate patient care and treatment; and, racial differences in critical encounters with the health system. Involvement with and health related experiences of family members and friends also influenced survivor interactions with the health care system, though differences by race were observed. Conclusion: Cancer survivors identified several healthcare system factors that influenced the nature of social network member involvement during cancer care, with some differences by race. Implications for system-changes to improve care for early-stage breast and lung cancer patients and survivors, and considerations of family and friend involvement in care, will be discussed. Citation Format: Katrina R. Ellis, Jennifer Schall, Stephanie Baker, Kristin Zenee Black, Carol Cothern, Kia Davis, Kay Doost, Eugenia Eng, Christina Goettsch, Fatima Guerrab, Christina Hardy, Alexandra Lightfoot, Neda Padilla, Cleo Samuel. A System-Change and Community-Based Participatory Research Approach to Understanding the Role of Informal Social Networks During the Cancer Care Journey. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A43.

Abstract P6-10-07: The birth outcomes of pre-menopausal breast cancer survivors: Do they have a greater prevalence of delivering a preterm infant?

BACKGROUND: Due to the advancement of screening and treatment options for cancer, more people are able to live fruitful lives after a cancer diagnosis, yet for pre-menopausal breast cancer survivors the effects of disease and treatment on birth outcomes is not well documented. POPULATION: Linked North Carolina birth record-cancer registry data were used to examine the birth outcomes of pre-menopausal breast cancer survivors. Out of the 2,213,464 eligible live births that occurred between 1990 and 2009 in North Carolina, 539 of the mothers are breast cancer survivors and 10.6% (n=235,262) of the mothers experienced a preterm birth (which is below the national average of 12%). A vast majority of the women have a high school diploma or are college educated (81.4%; n=1,796,594), 14.0% (n=309,208) of the women reported that they smoked during pregnancy, and about two-thirds of the women were not married at the time of the birth of their child (67.7%; n=1,499,053). A majority of the study population is non-Hispanic White (62.6%; n=1,385,393) followed by non-Hispanic Blacks (24.0%; n=531,584), Hispanics/Latinos (9.7%; 215,224), and non-Hispanics of other races (3.7%; n=81,250). METHODS: The aim of this study was to determine if breast cancer survivors of reproductive age (ages 18-49) who had a live birth after their diagnosis have a greater prevalence of preterm birth than women who were not diagnosed with breast cancer. Binomial regression was used to estimate the exposure-outcome association in this case-cohort study. FINDINGS: The crude prevalence of preterm birth for pre-menopausal breast cancer survivors is 2.01 (95% CI: 1.71-2.36) times the crude prevalence of preterm birth for women who were not diagnosed with breast cancer. When the data were stratified by race/ethnicity, the prevalence of preterm birth for pre-menopausal breast cancer survivors compared to women not diagnosed with breast cancer within each racial/ethnic group is 2.27 (1.85-2.79) for Whites, 1.45 (1.10-1.91) for Blacks, 2.23 (0.64-7.81) for Hispanics/Latinos, and 1.83 (0.52-6.50) for other races. Controlling for the mother’s education level, marital status, and smoking status during pregnancy, the prevalence of preterm birth for pre-menopausal breast cancer survivors compared to women not diagnosed with breast cancer within each racial/ethnic group is 2.37 (1.93-2.91) for Whites, 1.50 (1.14-1.98) for Blacks, 2.28 (0.65-7.97) for Hispanics/Latinos, and 1.79 (0.51-6.31) for other races. CONCLUSION: Women diagnosed with breast cancer during their reproductive years are potentially at greater risk of experiencing a preterm birth and may benefit from targeted preconception health interventions. Citation Format: Kristin Z Black, Diane L Rowley. The birth outcomes of pre-menopausal breast cancer survivors: Do they have a greater prevalence of delivering a preterm infant? [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P6-10-07.