Opportunities and challenges in discussing racism during primary care visits.

OBJECTIVE: To understand how patients and primary care practitioners (PCPs) discuss racism and their perspectives on having these conversations during primary care visits. DATA SOURCES/STUDY SETTING: We conducted semi-structured interviews from September 2020-March 2021 at a Federally Qualified Health Center in the San Francisco Bay Area. STUDY DESIGN: We conducted an inductive qualitative descriptive pilot study using one-on-one, semi-structured interviews with 5 members of a Patient Advisory Council and 10 internal medicine PCPs. DATA COLLECTION/EXTRACTION METHODS: Interviews were conducted via video conferencing, recorded, and transcribed. An iterative analytic process was used to thematically assess participants' experiences and perspectives and identify key themes. PRINCIPAL FINDINGS: Patients and PCPs identified benefits from engaging in conversations about racism during primary care visits and noted challenges and concerns. Patients and PCPs highlighted strategies to advance communication about racism in primary care. CONCLUSIONS: Initiating conversations about racism with patients in primary care can be meaningful, but also has risks. More research is needed for deeper exploration of patients' perspectives and development of trainings. Improving how PCPs communicate with patients about racism represents an opportunity to advance antiracism in medicine and improve health outcomes for individuals who have historically been poorly served by our health care system.

Addressing the challenges of conducting community-engaged research during COVID-19: Rapid development and evaluation of a COVID-19 Research Patient and Community Advisory Board (PCAB).

Introduction: We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation. Methods: We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned. Results: Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities. Conclusions: PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.

Family history of prostate and colorectal cancer and risk of colorectal cancer in the Women's health initiative.

BACKGROUND: Evidence suggests that risk of colorectal and prostate cancer is increased among those with a family history of the same disease, particularly among first-degree relatives. However, the aggregation of colorectal and prostate cancer within families has not been well investigated. METHODS: Analyses were conducted among participants of the Women's Health Initiative (WHI) observational cohort, free of cancer at the baseline examination. Subjects were followed for colorectal cancer through August 31st, 2009. A Cox-proportional hazards regression modeling approach was used to estimate risk of colorectal cancer associated with a family history of prostate cancer, colorectal cancer and both cancers among first-degree relatives of all participants and stratified by race (African American vs. White). RESULTS: Of 75,999 eligible participants, there were 1122 colorectal cancer cases diagnosed over the study period. A family history of prostate cancer alone was not associated with an increase in colorectal cancer risk after adjustment for confounders (aHR =0.94; 95% CI =0.76, 1.15). Separate analysis examining the joint impact, a family history of both colorectal and prostate cancer was associated with an almost 50% increase in colorectal cancer risk (aHR = 1.48; 95% CI = 1.04, 2.10), but similar to those with a family history of colorectal cancer only (95% CI = 1.31; 95% CI = 1.11, 1.54). CONCLUSIONS: Our findings suggest risk of colorectal cancer is increased similarly among women with colorectal cancer only and among those with both colorectal and prostate cancer diagnosed among first-degree family members. Future studies are needed to determine the relative contribution of genes and shared environment to the risk of both cancers.

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.

Disparities in barriers to follow-up care between African American and White breast cancer survivors.

PURPOSE: Despite recommendations for breast cancer survivorship care, African American women are less likely to receive appropriate follow-up care, which is concerning due to their higher mortality rates. This study describes differences in barriers to follow-up care between African American and White breast cancer survivors. METHODS: We conducted a mailed survey of women treated for non-metastatic breast cancer in 2009-2011, 6-24 months post-treatment (N = 203). Survivors were asked about 14 potential barriers to follow-up care. We used logistic regression to explore associations between barriers and race, adjusting for covariates. RESULTS: Our participants included 31 African American and 160 White survivors. At least one barrier to follow-up care was reported by 62 %. Compared to White survivors, African Americans were more likely to identify barriers related to out-of-pocket costs (28 vs. 51.6 %, p = 0.01), other health care costs (21.3 vs. 45.2 %, p = 0.01), anxiety/worry (29.4 vs. 51.6 %, p = 0.02), and transportation (4.4 vs. 16.1 %, p = 0.03). After adjustment for covariates, African Americans were three times as likely to report at least one barrier to care (odds ratio (OR) = 3.3, 95 % confidence interval (CI) = 1.1-10.1). CONCLUSIONS: Barriers to care are common among breast cancer survivors, especially African American women. Financial barriers to care may prevent minority and underserved survivors from accessing follow-up care. Enhancing insurance coverage or addressing out-of-pocket costs may help address financial barriers to follow-up care among breast cancer survivors. Psychosocial care aimed at reducing fear of recurrence may also be important to improve access among African American breast cancer survivors.

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.

Racial/Ethnic disparities in health care receipt among male cancer survivors.

OBJECTIVES: We examined racial/ethnic disparities in health care receipt among a nationally representative sample of male cancer survivors. METHODS: We identified men aged 18 years and older from the 2006-2010 National Health Interview Survey who reported a history of cancer. We assessed health care receipt in 4 self-reported measures: primary care visit, specialist visit, flu vaccination, and pneumococcal vaccination. We used hierarchical logistic regression modeling, stratified by age (< 65 years vs ≥ 65 years). RESULTS: In adjusted models, older African American and Hispanic survivors were approximately twice as likely as were non-Hispanic Whites to not see a specialist (odds ratio [OR] = 1.78; 95% confidence interval [CI] = 1.19, 2.68 and OR = 2.09; 95% CI = 1.18, 3.70, respectively), not receive the flu vaccine (OR = 2.21; 95% CI = 1.45, 3.37 and OR = 2.20; 95% CI = 1.21, 4.01, respectively), and not receive the pneumococcal vaccine (OR = 2.24; 95% CI = 1.54, 3.24 and OR = 3.10; 95% CI = 1.75, 5.51, respectively). CONCLUSIONS: Racial/ethnic disparities in health care receipt are evident among older, but not younger, cancer survivors, despite access to Medicare. These survivors may be less likely to see specialists, including oncologists, and receive basic preventive care.

African American prostate cancer survivors' treatment decision-making and quality of life.

OBJECTIVE: To examine African-American prostate cancer (PCa) survivors' involvement in treatment decision-making (TDM), and examine the association between TDM and quality of life (QOL), using secondary data. METHODS: African-American PCa survivors (181) were recruited from the North Carolina Central Cancer Registry. Participants completed a cross-sectional survey that asked about their chosen cancer treatment, TDM factors, and PCa-specific QOL (using the Expanded Prostate Cancer Index Composite--EPIC). Multivariate analysis of covariance was conducted to determine the association between TDM and QOL, controlling for confounders. RESULTS: Most men reported being active (44.2%) or collaborative (38.1%) in TDM, while 14.4% preferred a passive role. Adjusting for marital status, education and treatment, passive patients reported somewhat better QOL compared to active patients in the following QOL domains: urinary summary (p=0.04), urinary function (p=0.01), and urinary incontinence (p=0.03). CONCLUSION: Most African-American PCa survivors preferred to be, and were, actively or collaboratively involved in TDM. However, those who preferred a passive role reported better PCa-specific QOL for the urinary domain compared to others. PRACTICE IMPLICATIONS: It is important to assess patients' TDM preference. Patients' QOL may differ by their TDM role, such that active patients may be more bothered by treatment side effects than other patients.

Transitioning from active treatment: colorectal cancer survivors' health promotion goals.

OBJECTIVE: The purpose of this study is to describe the post-treatment goals of colorectal cancer (CRC) survivors. We sought to determine whether goals were a salient concept during the period immediately following treatment, and whether a goal-setting intervention might be feasible and acceptable to these patients. METHOD: Semi-structured qualitative interviews were administered to a convenience sample of 41 CRC patients who were 0-24 months post-treatment. Topics discussed included expectations and goals for future health, cancer prevention awareness, health-promoting behavior-change goals, and post-treatment cancer issues. Content analysis was used to explore emergent themes. RESULTS: Overall, participants' health-related goals were: being healthy, getting back to normal, and not having a cancer recurrence. Most of the CRC survivors reported being proactive with their health by maintaining healthy behaviors or making healthy behavior changes, or had goals to change their behavior. All respondents had plans to maintain follow-up care and regular screening appointments. Some patients were managing treatment side effects or non-cancer issues that limited their functional abilities. Many respondents were satisfied with the care they received, and felt it was now their responsibility to do their part in taking care of themselves. SIGNIFICANCE OF RESULTS: CRC survivors talk about goals, and many of them are either making or have an interest in making health behavior changes. Self-management support could be an appropriate strategy to assist patients with achieving their health goals post-treatment. Patients may need help addressing lingering treatment side effects or non-cancer issues. Healthcare providers should consider assessing patients' goals to help patients resolve post-treatment issues and promote healthy behaviors.