Monica Rosales

Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates

PurposeAfrican-American breast cancer survivors (AABCS) suffer the greatest from cancer recurrence, morbidity, and mortality in part due to the lack of cancer follow-up care and surveillance. To improve survival and survivorship, the Institute of Medicine advises that cancer survivors be provided a survivorship care plan (SCP). The current study investigated AABCS’ understanding of SCP and gathered preliminary feedback on infusing cultural and socioecological responsiveness.MethodsThe study embraced a community-based participatory research framework. Three facilitated, structured, consensus meetings were conducted with AABCS (N = 25) and advocates (N = 3) to provide information towards identifying the content domains of an SCP that are culturally responsive to AABCS.ResultsAABCS recommended inclusion of patient-centered information on the purpose and use of the SCP. They raised concerns that higher mortality in AABCS may be due to greater comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP document all comorbidities and medications, regardless of relationship to cancer; referrals for cancer-related providers; and culturally informed health advisories.ConclusionStudy findings indicate that the available SCP template lacked adequate content on health history, comorbidity, health promotion, and functioning. These factors constitute the underlying clinical, psychosocial, and behavioral risks for poor disease outcomes that may be exacerbated in AABCS.Implications for Cancer SurvivorsSCPs are intended to educate and activate patients to join their oncology care team as informed partners. However, the emerging science and implementation of SCPs seem void of patient input. Our investigation suggests a practical approach for survivor engagement in the SCP discourse to increase their cultural responsiveness and patient-centeredness.

Depressive symptomatology among Latina breast cancer survivors.

Healthcare professionals are providing care for a growing number of Latinas who are breast cancer survivors (BCS) and at greater risk for distress. This study reports on the prevalence of depressive symptomatology among a cohort of Latina BCS.

Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study

PURPOSE/OBJECTIVES To describe recruitment and retention strategies of a psychosocial intervention with African American and Latina American breast cancer survivors (BCSs). DESIGN Prospective design with pre- and post-testing. SETTING A mailed survey and assignment to telephone counseling or education booklet only. SAMPLE 587 African American and Latina American BCSs were recruited. METHODS The sample was drawn from the population-based California cancer and hospital registries, as well as community agencies. Mailed self-report health-related quality-of-life assessments were at baseline and 4-6 months follow-up. MAIN RESEARCH VARIABLES Accrual outcomes; recruitment and retention strategies. FINDINGS A total of 375 (64%) completed the baseline survey and 320 (55%) completed both baseline and follow-up assessments. The recruitment outcomes suggest that very special attention must be paid to the initial recruitment of Latina Americans to engage their interest and participation. For African Americans, particular attention must be devoted to their retention to address potential attrition. CONCLUSIONS Findings suggest that the inclusion of lower-income and ethnic minority cancer survivors in a longitudinal intervention study is doable. The results indicate that recruitment outcomes are influenced by participant and study characteristics. Successful enrollment requires investigations that attend to culturally and socioecologically informed recruitment and retention strategies, from staff selection, training, and supervision to overall study approach protocol, to address barriers to participation. IMPLICATIONS FOR NURSING Nursing research and practice have championed survivorship care, including psychosocial care. This article outlines practical strategies to recruit and retain population-based samples, ethnic minorities, and underserved survivors.

A telephonic‐based trial to reduce depressive symptoms among Latina breast cancer survivors

Greater mental health symptomatology of Latina breast cancer (LBC) patients along with the paucity of intervention trials to reduce distress underscores the scientific and practice gaps in comprehensive care. This trial investigated the effect of a paraprofessionally delivered, telephonic‐based psycho‐educational intervention on depressive symptoms among LBC patients.

Evaluation of therapeutic care delay among Latina- and European-American cervical cancer survivors

OBJECTIVES Cervical cancer (CCA) ranks among the deadliest of cancers. Globally CCA claims 275,000 lives yearly. Severe delays, in cancer diagnostic or therapeutic care, that approach ≥ 60 days negatively affect survival and survivorship outcomes. This study investigated socioeconomic and healthcare system factors influencing therapeutic care delays among cervical cancer survivors (CCS). METHODS 291 CCS (132 European-, 50 English-proficient (EP) Latina- and 109 limited English-proficient (LEP) Latina-Americans) were recruited from cancer registries. CCS retrospectively noted the days of delay in obtaining therapeutic care and reasons for delays. RESULTS CCS who were LEP Latina-Americans, had lower income and education reported severe therapeutic delays (≥ 60 days). LEP Latina-Americans experienced delays due to financial issues, doctors delay, and healthcare system issues (p < 0.001). Doctor and healthcare system delays significantly influenced therapeutic care delay in the logistic regression model. CONCLUSIONS Healthcare system delays are primary contributors to ethnic differences in access to appropriately-timed care observed in this study. Healthcare professionals need to develop a fuller appreciation of the multilevel factors that contribute to healthcare barriers to better inform effective interventions to increase access to life saving care.

Abstract C28: An exploratory study of co-occurrence of breast cancer and diabetes in medically underserved Latinas

Purpose: Cancer and diabetes are two severe chronic illnesses that often co-occur. The presence of diabetes in cancer patients is associated with increased risk for poor health outcomes and decreased overall survival. Lack of access to care and under-diagnosis of diabetes makes this co-occurrence particularly troubling among the Latino population. This preliminary study explored the association of diabetes with functioning and physical health outcomes among underserved Latina breast cancer survivors (BCS). Methods: In total, 137 low income Latina BCS were recruited from the California Cancer Registry, hospital cancer registries, and community agencies. Latina BCS completed a self-report questionnaire that assessed demographic and cancer-related medial characteristics, the co-occurrence of diabetes, and functional and physical outcomes. Results: Among Latina BCS, 98 (72%) were non-diabetic and 39 (28 %) were diabetic. Latina BCS with diabetes were more likely to report less than a high school education, being uninsured, and unemployed (p Conclusions: This preliminary investigation sheds new light on emerging evidence documenting the negative associations of comorbid chronic conditions such as diabetes on patients9 outcomes. More attention to the co-occurrence of cancer and chronic disease is warranted for addressing cancer health disparities. Our descriptive analysis offers support for additional inquiry and attention to the co-occurrence of cancer and chronic disease as a target for action in improvements in quality, patient-centered care and in the reduction of persistent health disparities. Citation Format: Kimlin T. Ashing, Monica Rosales, Raynald Samoa, Lily Lai, Roberto Vargas, Courtney Vito, Arti Hurria, Mayra Serrano. An exploratory study of co-occurrence of breast cancer and diabetes in medically underserved Latinas. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C28. doi:10.1158/1538-7755.DISP13-C28

Developing a culturally and linguistically responsive survivorship care plan for breast cancer.

146 Background: African and Latina-American breast cancers patients (BCA) experience the greatest morbidity and mortality, suggesting a critical need for improved surveillance and quality care. The Institute of Medicine (IOM) and the Commission on Cancer (CoC) recommend that survivors receive personalized Treatment Summaries and Survivorship Care Plans (TSSCP) in order to facilitate best practice in clinical surveillance and follow-up care. This TSSCP template development study joined advocacy, scientific and medical communities to comprise a diverse advisory council (AC, N=38) to inform the development of the TSSCP-AA (African American) and TSSCP-S (Latino) templates targeting BCA. This abstract reports on the development, and presents the TSSCP-AA and TSSCP-S. METHODS The overall study was guided by the Shared Care and Psychooncology Models, and Contextual Model of Health Related Quality of Life. The AC provided input into the culturally relevant modifications of the American Society of Clinical Oncology (ASCO) TSSCP template to create the TSSCP-AA and TSSCP-S. Health care professionals enlisted from cancer centers and community hospitals (n=51) evaluated the TSSCP-AA and TSSCP-S templates on the following domains: content, clarity, utility, and cultural and socioecological responsiveness. RESULTS AC input revealed that the clinical (i.e., comorbidities) and cultural contexts (i.e., language, spirituality) must inform TS and SCP, respectively. Preliminary evaluation analyses documented that health professionals rated our TSSCP-AA and TSSCP-S templates as excellent to outstanding on content, clarity, utility, cultural responsiveness, and socioecological responsiveness (p<0.01). CONCLUSIONS The evaluation results imply that the TSSCP-AA and TSSCP-S templates achieved cultural responsiveness with high acceptability and utility among professionals and survivors. We created both paper and electronic versions of theTSSCP-AA andTSSCP-S (English and bilingual English-Spanish formats) for providers to create individualized TSSCPs. Further, our TSSCP development approach can be adopted for TSSCP template development targeting ethnic/linguistic minority cancer survivors.

Developing a cultural and socioecological patient-centered survivorship care plan template for African American survivors.

40 Background: Cancer and its treatments bring added health and life challenges. Cancer survivors require ongoing surveillance and medical care. To facilitate best practice in follow-up care, the Institute of Medicine, the American Society of Clinical Oncology and advocacy organizations advise that cancer survivors be provided with treatment summaries and Survivorship Care Plan (SCP). African-American breast cancer survivors (AABCS) have poorer outcomes characterized by greater morbidity and mortality, hence warranting their careful surveillance and follow-up medical care. SCP investigations are urgently needed to improve follow-up care and cancer outcomes in AABCS. METHODS The study embraced a community-based participatory research framework, building upon a series of research projects conducted by the African American Cancer Coalition, a partnership of scientific researchers and community-based advocates. Three informative focus groups were conducted with AABCS (N=25) and advocates (N=3) to obtain input on cultural and socio-ecological SCP contents to increase patient responsiveness. RESULTS AABCS believed that increased mortality may be due to comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP attend to and document all comorbidities and medications; allow for participation of primary care providers; referrals for providers especially surgeons who are familiar with treating AABCS to the reduce keloid, and health advisories on nutrition, exercise and stress management. Quality-of-life related components and community referrals should be included because they are important for overall health. AABCS noted the importance of spirituality in life, and the disproportionately high levels of socioecological stress in the community. CONCLUSIONS Participants infused cultural and socioecologic relevance towards the development of a patient centered SCP template to increase acceptability and utilization among AABCS. Participants underscored that developing the SCP responsive to AABCS and facilitating adherence to SCP recommendations, are areas warranting increased intervention and research.

Abstract A47: Evaluating therapeutic care delay among Latina and European American cervical cancer survivors.

Purpose: Severe delays, in cancer diagnostic or therapeutic care, approaching ≥60 days negatively affect survival and survivorship outcomes. The purpose of this study was to investigate socioeconomic and healthcare system factors influencing therapeutic care delays among European- and Latina-American cervical cancer survivors (CCS). Methods: 291 CCS (132 European-, 50 English-proficient (EP) Latina-, and 109 limited English-proficient (LEP) Latina-Americans) were recruited from the California Cancer Registry and hospital registries. CCS completed a self-report questionnaire assessing demographic and cancer-related factors. CCS retrospectively noted the days of delay in obtaining therapeutic care and reasons for delays. Results: CCS who were LEP Latina-Americans, had lower income and education reported severe therapeutic delays (≥60 days). LEP Latina-Americans experienced more comorbidities (i.e., diabetes) and delays due to financial issues, doctors delay, and healthcare system issues (p<0.001). Doctor and healthcare system delays were significant predictors of delayed therapeutic care in the logistic regression model. Conclusions: It is well documented that timely access to therapeutic care for cancers results in better prognosis and less costly treatments; thus reducing the human and economic cost of CCA. Healthcare system delays, patient health status, income, and education significantly influenced access to appropriately-timed care. Yet, the interaction of provider-actions and patient factors remains largely unexplained and needs further comprehensive investigation with larger samples. Our findings indicate that healthcare system administrators, providers, and researchers need to develop a fuller appreciation of the multilevel factors that contribute to health care barriers to better inform effective interventions to increase access to life saving care. Citation Format: Monica Rosales, Kimlin Ashing-Giwa. Evaluating therapeutic care delay among Latina and European American cervical cancer survivors. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr A47.