Nynikka Palmer

Racial and Ethnic Disparities in Patient-Provider Communication, Quality-of-Care Ratings, and Patient Activation Among Long-Term Cancer Survivors

PURPOSE We examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors. METHODS In 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation. RESULTS Compared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant. CONCLUSION Asian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.

Impact of Rural Residence on Forgoing Healthcare after Cancer Because of Cost

Background: Routine follow-up care is recommended to promote the well-being of cancer survivors, but financial difficulties may interfere. Rural–urban disparities in forgoing healthcare due to cost have been observed in the general population; however, it is unknown whether this disparity persists among survivors. The purpose of this study was to examine rural–urban disparities in forgoing healthcare after cancer due to cost. Methods: We analyzed data from 7,804 cancer survivors in the 2006 to 2010 National Health Interview Survey. Logistic regression models, adjusting for sociodemographic and clinical characteristics, were used to assess rural–urban disparities in forgoing medical care, prescription medications, and dental care due to cost, stratified by age (younger: 18–64, older: 65+). Results: Compared with urban survivors, younger rural survivors were more likely to forgo medical care (P < 0.001) and prescription medications (P < 0.001) due to cost; older rural survivors were more likely to forgo medical (P < 0.001) and dental care (P = 0.05). Rural–urban disparities did not persist among younger survivors in adjusted analyses; however, older rural survivors remained more likely to forgo medical [OR = 1.66, 95% confidence interval (CI) = 1.11–2.48] and dental care (OR = 1.54, 95%CI = 1.08–2.20). Conclusions: Adjustment for health insurance and other sociodemographic characteristics attenuates rural–urban disparities in forgoing healthcare among younger survivors, but not older survivors. Financial factors relating to healthcare use among rural survivors should be a topic of continued investigation. Impact: Addressing out-of-pocket costs may be an important step in reducing rural–urban disparities in healthcare, especially for older survivors. It will be important to monitor how healthcare reform efforts impact disparities observed in this vulnerable population. Cancer Epidemiol Biomarkers Prev; 22(10); 1668–76. ©2013 AACR.

Familial Clustering of Breast and Prostate Cancer and Risk of Postmenopausal Breast Cancer in the Women's Health Initiative Study

Evidence suggests that the risk of breast and prostate cancer is increased among those with a family history of the same disease and particularly among first‐degree relatives. However, less is known about the relationship between breast and prostate cancer within families and particularly among minority populations.

Outcomes of men on active surveillance for low-risk prostate cancer at a safety-net hospital

PURPOSE To characterize demographic, disease, and cancer outcomes of men on active surveillance (AS) at a safety-net hospital and characterize those who were lost to follow-up (LTFU). METHODS From January 2004 to November 2014, 104 men with low-risk prostate cancer (PCa) were followed with AS at Zuckerberg San Francisco General Hospital (ZSFG). Criteria for AS have evolved over time; however, patients with diagnostic prostate-specific antigen (PSA) 10ng/mL or less, clinical stage T1/2, biopsy Gleason score 3 + 3 or 3 + 4, 33% or fewer positive cores, and 50% or less tumor in any single core were potentially eligible for AS. Men were longitudinally followed with a PSA or digital rectal examination or both every 3 to 6 months, and repeat prostate biopsy every 1 to 2 years. Clinical staging and grading were based on a physical examination and at least a 12-core biopsy, respectively. LTFU was defined as failure to successfully contact patients with 3 phone calls or any urology visit recorded within 18 months from a prior visit or biopsy. A secondary chart review was performed using the electronic medical record at ZSFG as well as EPIC Systems CareEverywhere which allows access to select non-ZSFG institutions to confirm that patients were truly LTFU. RESULTS Among the 104 men on AS at ZSFG, the median age at diagnosis of PCa was 61.5 years (range: 44-81). The median follow-up period was 29 months (range: 0-186 months) during which 18 (17.3%) men were LTFU and 48 (46%) remained on surveillance. Men underwent a median of 7 (1-21) serum PSA measurements and an average of 2 prostate biopsies (1-5). In total, 22 (20.6%) men had definitive treatment with the median time from diagnosis to active treatment being 26 (range: 2-87) months. Radiation therapy was more common than radical prostatectomy (12.5% vs. 7.7%). There was 1 PCa-related death and 3 noncancer deaths. Initial adherence to AS was poor; however, men committed to AS initially were ultimately more compliant over time. CONCLUSION AS for low-risk PCa is challenging among a vulnerable population receiving care in a safety-net hospital, as rates of LTFU were high. Our findings suggest the need for AS support programs to improve adherence and follow-up among vulnerable and underserved populations.

Abstract C35: Racial disparities in barriers to follow-up care among breast cancer survivors

Purpose: After completing primary treatment for breast cancer, regular follow-up care is recommended to monitor for recurrence and second primary cancers, and to manage late and long-term effects of cancer and its treatment, comorbidities, and psychosocial issue. Lack of follow-up care may be particularly concerning for African American women, who have higher breast cancer mortality despite lower incidence rates compared to White women. Reasons why survivors may not receive follow-up care are poorly understood; therefore we describe breast cancer survivors9 perceived barriers to follow-up care, including differences between African American and White women, and examine factors associated with perceived barriers to care. Methods: We conducted a mailed cross-sectional survey of women identified from an institutional cancer registry and treated for non-metastatic breast cancer 6 to 24 months post-treatment. Survivors were asked whether each of 14 potential barriers presented a big problem, somewhat of a problem or no problem in receiving follow-up care. The list of barriers was adapted from an earlier survey of follow-up care among cancer survivors. We created two dichotomous measures: any barrier to care (any barrier rated as “somewhat of a problem” or “a big problem,” vs. all 14 barriers reported as “no problem”) and cost-related barriers to care (any of three cost-related barriers rated as “somewhat of a problem” or “big problem versus all three barriers reported as “no problem). We used logistic regression analysis to explore associations between barriers (any barrier and cost-related barriers) and race, adjusting for age at diagnosis, current residence, marital status, education, employment, health insurance coverage, and time since diagnosis. Results: Thirty-one African American and 160 White survivors made up our analytic sample. The mean age at diagnosis was 58.5 (SD=11.4), all had surgery, 37% received chemotherapy, 51% received radiation therapy, and 53% received hormone therapy. Sixty-two percent of survivors reported at least one barrier to follow-up care. African American survivors were more likely to identify the following barriers to care compared to White survivors: out of pocket medical costs (52% vs. 28%), cannot afford other associated costs (45% vs. 21%), feeling anxious or worried (52% vs. 29%), and lack of transportation to doctor (16% vs. 4%). Compared to African American survivors, White survivors were more likely to report distance to travel to see doctor as a barrier (3% vs. 19%). Overall, African American survivors were more likely to report at least one barrier (81% vs. 58%) and at least one cost-related barrier (59% vs. 33%). In models adjusting for sociodemographic and clinical characteristics, African Americans were more likely to report any barrier (OR=3.3, 95% CI=1.1-10.1). For cost-related barriers, race was not significant after adjusting for other factors (OR=2.5, 95% CI=0.9-6.6); however, having public health insurance coverage (OR=4.8, 95% CI=1.1-20.4) and no insurance (OR=31.0, 95% CI=2.7-360.5) remained significant predictors compared to having both public and private health insurance. Conclusions: A majority of breast cancer survivors report barriers to follow-up care, most commonly anxiety or worry or financial concerns. African American breast cancer survivors were more likely to report any barrier to care, even after adjustment for sociodemographic and clinical factors. Different interventions are likely needed to help survivors overcome barriers to care. Enhancing insurance coverage or addressing out of pocket costs may reduce financial barriers, but psychosocial care aimed at reducing fear of cancer recurrence may reduce barriers associated with anxiety or fear. Citation Format: Nynikka Palmer, Kathryn Weaver, Sally Hauser, Jennifer Talton, L. Douglas Case, Julia Lawrence, Kimberly Dezern, Ann Geiger. Racial disparities in barriers to follow-up care among breast cancer survivors. [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 C35. doi:10.1158/1538-7755.DISP13-C35

Minority recruitment trends in phase III prostate cancer clinical trials (2003-2014): progress and critical areas for improvement

Purpose: American minority groups have been historically underrepresented in phase III prostate cancer clinical trials despite often having higher risk disease. We analyzed enrollment trends of major racial/ethnic groups in the United States in phase III prostate cancer trials between 2003 and 2014 compared to SEER (Surveillance, Epidemiology and End Results) incidence data. Materials and Methods: Phase III prostate cancer trials primarily enrolling patients from the United States were identified in the ClinicalTrials.gov database. Enrollment trends were analyzed for major racial/ethnic groups. Prostate cancer incidence data from the SEER registry were used to identify enrollment targets. The enrollment difference was determined by calculating the absolute difference between the percent of a racial/ethnic subgroup in the SEER registry population and the percent of that subgroup in the phase III prostate cancer trial population. Results: Among 39 studies identified African American enrollment in therapeutic trials increased across the study period (p <0.001). The enrollment difference for African Americans was –9.0% (95% CI –7.6- –10.5, p <0.001) in 2003 to 2005 and 1.4% (95% CI 0.2–2.6, p = 0.020) in 2012 to 2014. However, African American men were under enrolled in metastatic disease trials (enrollment difference –5.8%, 95% CI –4.8- –6.8, p <0.001). Latino and Asian American men were consistently under enrolled in all trial types. Conclusions: Minority groups in the United States were largely under enrolled in phase III prostate cancer trials between 2003 and 2014. While recruitment efforts may have had an impact, as demonstrated by increased enrollment of African American men, there remains a need to expand recruitment efforts to achieve diversity in trials.

Racial and Ethnic Differences in Prostate Cancer Survivors’ Perceived Engagement in Treatment Decision-Making

ObjectiveWe examined prostate cancer patients’ perceived engagement in treatment decision-making and associated factors by race/ethnicity in a multiethnic sample.MethodWe identified patients through the California Cancer Registry. Patients completed a cross-sectional telephone interview in English, Spanish, Cantonese, or Mandarin. Multivariable logistic regression models, stratified by race/ethnicity, estimated the associations of patient demographic and health status characteristics on (1) doctor asked patient to help decide treatment plan and (2) patient and doctor worked out a treatment plan together.ResultsWe included 855 prostate cancer patients: African American (19%), Asian American (15%), Latino (24%), and White (42%). Asian American patients were less likely than White patients to report that their doctors asked them to help decide a treatment plan (OR = 0.31; 95% CI = 0.18–0.53) and that they worked out a treatment plan with their doctors (OR = 0.54; 95% CI = 0.33–0.90). Language of interview was a significant contributing factor in stratified analysis for both outcomes.ConclusionAsian American prostate cancer patients reported less engagement in treatment decision-making, with Chinese language being a significant contributing factor. Future research should identify patient-centered strategies that effectively engage underserved patients and support healthcare providers in shared decision-making with multiethnic and multilingual patients.

A bilingual, Internet-based, targeted advertising campaign for prostate cancer clinical trials: Assessing the feasibility, acceptability, and efficacy of a novel recruitment strategy

Background To address limitations in recruitment and enrollment of diverse, low-literacy patients into prostate cancer clinical trials, we evaluated the feasibility, acceptability, and efficacy of an English and Spanish, Internet-based, multilevel recruitment intervention. Methods Intervention components included (1) a low-literacy, bilingual, automated, Internet-based clinical trial matching tool; (2) a bilingual nurse who assisted individuals with questions and enrollment; and (3) a targeted, Internet-based advertising campaign. We evaluated (a) completion of matching tool, (b) expression of interest in a clinical trial, (c) number of patients who matched to clinical trials at a single institution, (d) discussion of risks and benefits of clinical trials (via follow-up interviews), and (e) effect of the advertising on completing the matching tool. Feasibility, acceptability, and preliminary estimates of efficacy were measured through user engagement with the matching tool and subsequent qualitative interviews with these same users. Results During the 28-week study period, 523 users provided demographic information, 263 were identified with prostate cancer, 192 (73%) matched to at least one clinical trial, and 29 (15.1%) of those who matched provided contact information. During the study period, 17 prostate cancer clinical trials were available for matching. We completed follow-up interviews with 14 of the 29 men who provided contact information. Of the 14, 85.7% discussed the risks and benefits of clinical trials with their physician, and 35.7% enrolled in a clinical trial. The Internet-based advertising campaign resulted in an increased number of matching tool completions. Conclusions Our study demonstrates that an Internet-based clinical trial matching tool that is advertised using a targeted Internet-based campaign can provide an effective means to reach diverse, low-literacy patients. When implemented at scale and over a longer duration, such interventions may help increase trial participation among underrepresented populations.

MP14-02 THE NATURAL HISTORY OF MEN ON ACTIVE SURVEILLANCE WITH LOW-RISK PROSTATE CANCER AT A SAFETY-NET, COUNTY HOSPITAL

Author(s): Osterberg, E Charles; Palmer, Nynikka; Harris, Catherine; Murphy, Gregory; Blaschko, Sarah; Chu, Carissa; Cooperberg, Matthew; Carroll, Peter; Breyer, Benjamin

Abstract A53: Racial and ethnic disparities in prostate cancer survivors' perceived engagement in treatment decision making

Objective: Shared decision making is especially important in prostate cancer as treatment decisions are inherently demanding and complex. There are multiple treatment options in which none are superior for survival. The complexity of treatment decision making in weighing pros and cons, considering patients9 values and personal preferences, and physicians9 recommendations is even more challenging for patients of low health literacy and/or limited English proficiency, both of which are disproportionately represented among racial and ethnic minorities. However, research is scant regarding the extent of minority patients9 involvement in treatment decision making, particularly in prostate cancer where treatment options remain controversial and conflict of interest is inherent in clinical decision making. This study examines racial and ethnic disparities in prostate cancer survivors9perceived engagement in treatment decision making with their doctors, and factors associated with racial and ethnic disparities in a multiethnic sample. Methods: Racially and ethnically diverse prostate cancer patients, age 18-75 years old, were identified through the California Cancer Registry. Participants completed a cross-sectional 30-minute telephone interview in English, Spanish, Cantonese, or Mandarin (N=855). Multivariable logistic regression models were used to investigate racial and ethnic disparities in (1) doctors asking patients to help decide treatment plan, (2) patients and doctors working out a treatment plan together, and (3) factors significantly associated with patient9s perceived involvement in decision making, by race/ethnicity. Results: Participants included African American (19%), Asian American (15%), Latino (24%), and White (42%) participants diagnosed with stage I or II prostate cancer. More than half were married/living with a partner (76%), college graduates (51%), from Northern California (59%), and English speakers (83%). A smaller portion of participants had public or no health insurance (20%), were of low health literacy (19%), and received treatment with hormone therapy or chemotherapy (15%). Asian American participants were less likely than Whites to have their doctors ask them to help decide on a treatment plan (OR=0.31; 95% CI=0.18-0.53), with Cantonese/Mandarin language being a significant contributing factor for these participants (OR=0.08; 95% CI=0.01-0.63). Similarly, Asian Americans were also less likely to work out their treatment plan with their doctors (OR=0.54; 95% CI=0.33-0.90), and Cantonese/Mandarin language was also significantly associated (OR=0.04; 95% CI=0.01-0.25). There were no significant differences in outcomes comparing African Americans or Latinos to White participants. Conclusion: Asian American prostate cancer patients report less engagement in treatment decision making, with language being a significant contributing factor. This is concerning because patients9 values and preferences need to be considered and weigh heavily in the decision. Providers should consider potential language barriers for newly diagnosed patients and seek resources to support these patients (e.g., translators, patient navigators, etc.). Additionally, providers may require additional training and resources to help them engage vulnerable patients, particularly Asian American cancer patients, in shared decision making, which requires skills in elicitation and risk communication. Future research is needed to explore strategies to best engage underserved patients and effectively support healthcare providers in shared treatment decision making. Citation Format: Nynikka R.A. Palmer, Steven Gregorich, Jennifer Livaudais-Toman, Celia Kaplan. Racial and ethnic disparities in prostate cancer survivors9 perceived engagement in treatment decision making. [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 A53.