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The long-term reproductive health impact of cancer treatments is a concern for premenopausal women with a history of breast cancer. This study examined the unmet sexual and reproductive health needs of breast cancer survivors, as well as concordances and discordances in needs by childbearing status and race. We interviewed 17 women diagnosed with breast cancer between the ages of 18 and 45 years and living in North Carolina. To analyze these data, we used the Sort and Sift, Think and Shift© method, a multidimensional qualitative analysis approach. We learned that breast cancer survivors (a) received limited reproductive health information, (b) desired realistic expectations of conceiving postcancer, (c) struggled with adjusting to their altered physical appearance, and (d) had menopause symptoms that led to sexual health and quality of life issues. Breast cancer survivors are in need of and desire more education and resources to address their sexual and reproductive health concerns.

This retrospective, secondary qualitative analysis investigates whether health system factors influence social support among Black and white breast and lung cancer survivors and racial differences in support. These data come from race- and cancer-stratified focus groups (n = 6) and interviews (n = 2) to inform a randomized controlled trial utilizing antiracism and community-based participatory research approaches. Findings indicate social support was helpful for overcoming treatment-related challenges, including symptom management and patient-provider communication; racial differences in support needs and provision were noted. Resources within individual support networks reflect broader sociostructural factors. Reliance on family/friends to fill gaps in cancer care may exacerbate racial disparities.

PURPOSE: Annually, >45,000 U.S. women are diagnosed with cancer during adolescence and young adulthood (AYA). Since 2006, national guidelines have recommended fertility counseling for cancer patients. We examined childbirth after AYA cancer by calendar period, cancer diagnosis, and maternal characteristics. METHODS: We identified a cohort of women with an incident invasive AYA cancer diagnosis at ages 15–39 during 2000–2013 in North Carolina. Cancer records were linked with statewide birth certificates through 2014. Hazard ratios (HR) and 95% confidence intervals (CI) for first post-diagnosis live birth were calculated using Cox proportional hazards regression. RESULTS: Among 17,564 AYA cancer survivors, 1,989 had ≥ 1 birth after diagnosis during 98,397 person-years. The 5- and 10-year cumulative incidence of live birth after cancer was 10% and 15%, respectively. AYA survivors with a post-diagnosis birth were younger at diagnosis, had lower stage disease, and had less often received chemotherapy than those without a birth. The 5-year cumulative incidence of post-diagnosis birth was 10.0% for women diagnosed during 2007–2012, compared to 9.4% during 2000–2005 (HR=1.01; 0.91, 1.12), corresponding to periods before and after publication of American Society of Clinical Oncology fertility counseling guidelines in 2006. CONCLUSIONS: Despite advances in fertility preservation options and recognition of fertility counseling as a part of high quality cancer care, the incidence of post-diagnosis childbirth has remained stable over the last 15 years. IMPLICATIONS FOR CANCER SURVIVORS: Our study uses statewide data to provide recent, population-based estimates of how often AYA women have biological children after a cancer diagnosis.

PURPOSE: Racial disparities in cancer treatment-related symptom burden are well-documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients’ treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities. As part of the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) study, we examined racial differences in symptom management experiences among Black and White breast cancer survivors (BCS). METHODS: We conducted six focus groups (n=3 Black BCS groups; n=3 White BCS groups) with 22 stage I-IV BCS at two cancer centers. Focus groups were audio-recorded and transcribed verbatim. Based on key community-based participatory research principles, our community/academic/medical partner team facilitated focus groups and conducted qualitative analyses. RESULTS: All BCS described positive symptom management experiences, including clinician attentiveness to symptom concerns and clinician recommendations for pre-emptively managing symptoms. Black BCS commonly reported having to advocate for themselves to get information about treatment-related symptoms, and indicated dissatisfaction regarding clinicians’ failure to disclose potential treatment-related symptoms or provide medications to address symptoms. White BCS often described dissatisfaction regarding inadequate information on symptom origins and clinicians' failure to offer reassurance. CONCLUSIONS: This study elucidates opportunities for future research aimed at improving equity for cancer treatment-related symptom management. For Black women, warnings about anticipated symptoms and treatment for ongoing symptoms were particular areas of concern. Routine symptom assessment for all women, as well as clinicians’ management of symptoms for racially-diverse cancer patients, need to be more thoroughly studied and addressed.

Background: Treatment-related side effects (e.g., pain, fatigue, nausea/vomiting) are commonly reported among cancer patients and impact patients' health-related quality of life (HRQOL) and treatment adherence. While there is extensive literature documenting disparities in cancer treatment and outcomes, less is known about racial and educational differences in symptom burden and access to supportive care services during treatment. As part of a National Cancer Institute-funded research study, Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS), we examined racial and educational variations in symptom reports and supportive care referrals among breast cancer patients undergoing chemotherapy at two cancer centers. Methods: We surveyed 61 Black and White stages I-III breast cancer patients undergoing chemotherapy at one academic and one community-based cancer center during 2016-2018. Survey items assessed patient sociodemographics, HRQOL and symptoms, supportive care, and care satisfaction. Using a community-based participatory research approach, our community/academic/medical partnership administered patient surveys and evaluated symptom burden and supportive care referrals stratified by race (Black vs. White) and education (less than a college degree vs. college degree or higher). Results: Overall, the most commonly reported HRQOL/symptom concerns included employment interference (44.3%), social life interference (39.3%), financial difficulties (34.4%), worry (29.5%), skin toxicities (26.2%), and pain (26.2%). Compared with White patients, Black patients were more likely to report moderate-to-severe anxiety (41.2% vs. 20.5%, p=.05) and vomiting (17.6% vs. 2.3%, p=.03). Patients with less than a college degree were more likely to report moderate-to-severe constipation than patients with a college degree or higher (20.0% vs. 0.0%, p=.028). In terms of supportive care services, patients were most often referred to cancer support groups (83.9%), nutrition/dietary consultations (54.1%), and financial counseling (54.1%). Black patients were less likely to be referred to supportive services for cancer-specific communication with their families than their White counterparts (16.7% vs. 38.6%, p=.04). No statistically significant educational differences in supportive care referrals were observed. Conclusions: Breast cancer patients experience a range of HRQOL/symptom concerns and supportive care needs during treatment; however, racial and educational differences exist in these cancer care outcomes. Given longstanding disparities in cancer care outcomes, and the survival and HRQOL benefits of supportive care services, future research should examine barriers to equitable supportive care and opportunities for improvement Citation Format: Cleo A. Samuel, Jennifer Schaal, Olive M. Mbah, Wendi Elkins, Eugenia Eng, Linda Robertson, Stephanie Baker, Kristin Z. Black, Crystal Dixon, Katrina Ellis, Fatima Guerrab, Lauren Jordan, Alexandra F. Lightfoot, Neda R. Padilla, Christina Younge, Samuel Cykert. Racial and educational differences in symptom burden and supportive care among breast cancer patients undergoing chemotherapy [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr B026.

Health-related quality of life (HRQOL) and pain are important supportive cancer care outcomes. The patient-provider relationship, a modifiable care experience, has been linked to healthcare outcomes; however, less is known about associations between patient-provider relationship and supportive care outcomes in cancer patients. We examined the role of multiple aspects of the patient-provider relationship in explaining patterns of HRQOL and pain among breast and lung cancer patients. Our analysis included 283 breast and lung cancer patients from two cancer centers. Clinical data and survey data on patient sociodemographic factors, physical and mental HRQOL, pain, and patient-physician relationship (i.e., doctor’s respectfulness, time spent with doctors, patient involvement in decision-making, satisfaction with care, and following doctor’s advice/treatment plan) were collected at baseline and during treatment. We estimated adjusted modified Poisson regression models to assess associations between patient-physician relationship factors and physical and mental HRQOL and pain. Compared with patients reporting suboptimal respect from doctors, patients reporting optimal respect were less likely to report below average physical HRQOL (adjusted risk ratio (ARR), 0.73; 95%CI, 0.62–0.86), below average mental HRQOL (ARR, 0.71; 95%CI, 0.54–0.93), and moderate-to-severe pain (ARR, 0.53; 95%CI, 0.35–0.79). Patients reporting optimal involvement in care decision-making and patients who reported following their doctor’s advice/treatment plan were less likely to report below average mental HRQOL than their respective counterparts (ARR, 0.64; 95%CI, 0.50–0.83; ARR, 0.65; 95%CI, 0.48–0.86). Multiple patient-physician relationship factors account for variations in HRQOL and pain in cancer patients. These findings provide insight into potential targets for improving the patient-provider relationship and supportive cancer care outcomes.

BACKGROUND: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients’ cancer center experiences, explore racial differences in experiences, and inform systems-level interventions. METHODS: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences. RESULTS: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care. CONCLUSIONS: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients’ interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants’ insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

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.

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 ( 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.

Each year, >45,000 U.S. women are diagnosed with cancer during adolescence and young adulthood (AYA), defined by the National Cancer Institute as ages 15–39 years. ASCO first published guidelines on fertility counseling and preservation for cancer patients in 2006. Few studies have assessed birth rates after cancer among AYAs. We identified women with an incident cancer diagnosis at ages 15–39 during 2000–2013 in the North Carolina Cancer Registry. Cancer records were linked with statewide birth certificates through 2014 using a probabilistic algorithm. Hazard ratios (HR) and 95% confidence intervals (CI) for childbirth were calculated using Cox proportional hazards regression, with person-time accrued from cancer diagnosis until death, 46th birthday or December 31, 2014 and adjusted for age at diagnosis. Among 19,507 AYA cancer survivors, 2,343 had ≥1 post-diagnosis birth during 110,216 person-years. The 5- and 10-year cumulative incidence of post-diagnosis birth was 12% and 18%, respectively. The most common cancers were breast (25%), thyroid (14%), gynecologic (10%), melanoma (10%), and lymphoma (7%). The percent with a birth after diagnosis was lowest for breast and gynecologic cancer (6% for both) and highest for Hodgkin lymphoma (23%) and melanoma (24%). Survivors with a birth after diagnosis were more often younger, had not received radiation or chemotherapy, and had lower stage disease. African American women were less likely to have a post-diagnosis birth than white women overall (HR = 0.82; 0.73, 0.92), due in part to a higher proportion of breast cancers (35% vs. 23%). About 30% of births were 5 years after (mean = 3.5 years). Half (48%) were to women who were nulliparous at diagnosis. The 5-year cumulative incidence of post-diagnosis birth was 11.7% for women diagnosed during 2007–2012 (after ASCO's 2006 guidelines), compared to 11.6% during 2000–2005 (HR = 0.98; 0.89, 1.08) and varied little by cancer type. Despite advances in fertility preservation options and recognition of fertility counseling as a part of high quality cancer care, birth rates have remained stable over the last 15 years. Low implementation of fertility counseling and limited access to fertility preservation may be contributing factors.

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.