Representation Matters: Trust in Digital Health Information Among Black Patients With Prostate Cancer.

PURPOSE: Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS: We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS: Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS: Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.

The role of race/ethnicity and age in clinical trial knowledge among patients with gynecologic malignancy.

PURPOSE: To identify whether race/ethnicity plays a role in knowledge of clinical trials among patients with a gynecologic malignancy. PATIENTS AND METHODS: A cross-sectional survey was conducted at a tertiary medical center. Participants were adults (≥18 years old), with gynecologic malignancy, and literate in English, Spanish or Chinese. Participants completed a 9-item clinical trial knowledge assessment. Demographic characteristics were summarized using descriptive statistics. A multivariable model was employed to evaluate the relationship between race/ethnicity and clinical trial knowledge. RESULTS: 245 patients were approached, 25 (10.2%) declined. Among participants, 108 (50.2%) were white, and 107 (49.8%) were people of color. Significant differences were noted for age, education, birthplace, and income; no difference was observed for cancer type or stage. The median number of correct answers for the knowledge assessment was seven. 67 (62%) white vs 26 (24.3%) people of color had an above average clinical trial knowledge score (p < 0.001). Multivariable analysis showed white participants were 2.7 times more likely to have an above average clinical trial knowledge score. White participants overall utilized more resources. Elder adults (≥65 years old) had higher knowledge of clinical trials compared to non-elder adults (<65 years old); however, these findings were not significant. CONCLUSION: This study observed significant differences in clinical trial knowledge between white and people of color diagnosed with a gynecologic malignancy. White patients utilize more informational resources compared to people of color. Further studies need to develop resources and outreach mechanisms that will increase access and diversity in clinical trial participation.

COVID-19 Outcomes Among Patients With Cancer: Observations From the University of California Cancer Consortium COVID-19 Project Outcomes Registry.

BACKGROUND: The risks associated with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and its associated illness, coronavirus disease 2019 (COVID-19), among patients with a cancer diagnosis have not been fully characterized. This study leverages data from a multi-institutional cohort study, the University of California Cancer COVID Consortium, to evaluate outcomes associated with SARS-CoV-2 infection among patients with cancer. METHODS: Clinical data were collected from March to November 2020 and included patient demographics, cancer history and treatment, SARS-CoV-2 exposure and testing, and COVID-19 clinical management and outcomes. Multivariate ordinal logistic regression permitting unequal slopes was used to evaluate the impact of demographic, disease, and treatment factors on SARS-CoV-2 related hospitalization, intensive care unit (ICU) admission, and mortality. FINDINGS: Among all evaluated patients (n = 303), 147 (48%) were male, 118 (29%) were older adults (≥65 years old), and 104 (34%) were non-Hispanic white. A subset (n = 63, 21%) had hematologic malignancies and the remaining had solid tumors. Patients were hospitalized for acute care (n = 79, 26%), ICU-level care (n = 28, 9%), or died (n = 21, 7%) due to COVID-19. Patients with ≥2 comorbidities were more likely to require acute care (odds ratio [OR] 2.09 [95% confidence interval (CI), 1.23-3.55]). Cough was identified as a significant predictor of ICU hospitalization (OR 2.16 [95% CI, 1.03-4.57]). Importantly, mortality was associated with an active cancer diagnosis (OR 3.64 [95% CI, 1.40-9.5]) or advanced age (OR 3.86 [95% CI, 1.2-12.44]). INTERPRETATION: This study observed that patients with active cancer or advanced age are at an increased risk of death from COVID-19. These study observations can inform risk counseling related to COVID-19 for patients with a cancer diagnosis.

Representation in Online Prostate Cancer Content Lacks Racial and Ethnic Diversity: Implications for Black and Latinx Men.

PURPOSE: Black men have the highest incidence and mortality from prostate cancer (PCa) and lower quality of life compared to other U.S. racial groups. Additionally, more Latinx men are diagnosed with advanced disease and fewer receive guideline-concordant care. As many men seek medical information online, high-quality information targeting diverse populations may mitigate disparities. We examined racial/ethnic representation and information quality in online PCa content. MATERIALS AND METHODS: We retrieved 150 websites and 150 videos about "prostate cancer" using the most widely used search engine (Google) and social network (YouTube). We assessed quality of health information, reading level, perceived race/ethnicity of people featured in the content and discussion of racial/ethnic disparities. RESULTS: Among 81 websites and 127 videos featuring people, 37% and 24% had perceived Black representation, and racial/ethnic disparities were discussed in 27% and 17%, respectively. Among 1,526 people featured, 9% and 1% were perceived as Black and Latinx, respectively. No content with Black or Latinx representation was high quality, understandable, actionable and at the recommended reading level. CONCLUSIONS: Black and Latinx adults are underrepresented in online PCa content. Online media have significant potential for public education and combating health disparities. However, most PCa content lacks diversity and is not readily understandable.

Differential treatment outcomes in BRCA1/2-, CDK12-, and ATM-mutated metastatic castration-resistant prostate cancer.

BACKGROUND: DNA damage repair mutations (DDRm) are common in patients with metastatic castration-resistant prostate cancer (mCRPC). The optimal standard therapy for this population is not well described. METHODS: A multi-institutional, retrospective study of patients with mCRPC and DDRm was conducted. Patient data, including systemic therapies and responses, were collected. The decline in prostate-specific antigen ≥ 50% from baseline (PSA50) and overall survival (OS) from the treatment start were compared by mutation and treatment type. A multivariable Cox proportional hazards model for OS was created that controlled for DDRm, first-line treatment received for mCRPC, and clinical factors. RESULTS: The most common DDRm observed among 149 men with mCRPC were BRCA1/2 (44%), CDK12 (32%), and ATM (15%). The majority received first-line abiraterone (40%) or enzalutamide (30%). The PSA50 rate with first-line abiraterone was lower for CDK12 (52%) than BRCA1/2 (89%; P = .02). After first-line abiraterone or enzalutamide, the median OS was longest with second-line carboplatin-chemotherapy (38 months) in comparison with abiraterone or enzalutamide (33 months), docetaxel (17 months), or cabazitaxel (11 months; P = .02). PSA50 responses to carboplatin-based chemotherapy were higher for BRCA1/2 (79%) than ATM (14%; P = .02) or CDK12 (38%; P = .08). In a multivariable analysis, neither the specific DDRm type nor the first-line treatment was associated with improved OS. CONCLUSIONS: Responses to standard therapies were generally superior in patients with BRCA1/2 mutations and inferior in patients with ATM or CDK12 mutations. The DDRm type did not independently predict OS. After progression on first-line abiraterone or enzalutamide, carboplatin-based chemotherapy was associated with the longest OS. These findings may inform treatment discussions and clinical trial design and require prospective validation.

Loneliness and symptom burden in oncology patients during the COVID-19 pandemic.

BACKGROUND: Loneliness and social isolation are significant public health problems that are being exacerbated during the coronavirus disease 2019 pandemic. Little is known about the associations between loneliness and symptom burden in oncology patients before and during the pandemic. Study purposes include determining the prevalence of loneliness in a sample of oncology patients; evaluating for differences in demographic, clinical, and symptom characteristics between lonely and nonlonely patients; and determining which demographic, clinical, and symptom characteristics were associated with membership in the lonely group. METHODS: A convenience sample (n = 606) completed online surveys that evaluated the severity of loneliness, social isolation, and common symptoms (ie, anxiety, depression, fatigue, sleep disturbance, cognitive dysfunction, and pain) in oncology patients. Parametric and nonparametric tests were used to evaluate for differences in scores between the lonely and nonlonely groups. Logistic regression analysis was used to determine risk factors for membership in the loneliness group. RESULTS: Of the 606 patients, 53.0% were categorized in the lonely group. The lonely group reported higher levels of social isolation, as well as higher symptom severity scores for all of the symptoms evaluated. In the multivariate model, being unmarried, having higher levels of social isolation, as well as higher levels of anxiety and depressive symptoms were associated with membership in the lonely group. CONCLUSIONS: Study findings suggest that a significant number of oncology patients are experiencing loneliness, most likely as a result of mandate social distancing and isolation procedures. The symptom burden of these patients is extremely high and warrants clinical evaluation and interventions.

Prostate cancer patients' self-reported participation in research: an examination of racial/ethnic disparities.

PURPOSE: We examined prostate cancer patients' participation in research and associated factors by race/ethnicity in a multiethnic sample. METHODS: Men with a new diagnosis of prostate cancer were identified 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 characteristics with participation in (1) any research, (2) behavioral research, and (3) biological/clinical research. RESULTS: We included 855 prostate cancer patients: African American (19%), Asian American (15%), Latino (24%), and White (42%). In the overall model of participation in any research, African American men (Odds Ratio (OR) = 2.54, 95% CI 1.63-3.94), and those with two or more comorbidities (OR = 2.20, 95% CI 1.27-3.80) were more likely to report participation. Men 65 years old and older (OR = 0.65, 95% CI 0.47-0.91), those who were married or living with a partner (OR = 0.67, 95% CI 0.45-0.98), and those who completed the interview in Spanish (OR = 0.36, 95% CI 0.15-0.85) were less likely to report participating in any research. Stratified analyses identified racial/ethnic-specific sociodemographic characteristics associated with lower research participation, including Spanish or Chinese language, older age, and lower education. CONCLUSION: African American prostate cancer patients reported higher research participation than all other groups. However, recruitment efforts are still needed to overcome barriers to participation for Spanish and Chinese speakers, and barriers among older adults and those with lower education levels.

Oncology patients' perceptions of and experiences with COVID-19.

PURPOSE: No information is available on cancer patients' knowledge of and experiences with COVID-19. We undertook an evaluation of differences in COVID-19 symptom occurrence rates, COVID-19 testing rates, clinical care activities, knowledge of COVID-19, and use of mitigation procedures between patients who were and were not receiving active cancer treatment. METHODS: Patients enrolled were > 18 years of age; had a diagnosis of cancer; and were able to complete the emailed study survey online. RESULTS: Of the 174 patients who participated, 27.6% (n = 48) were receiving active treatment, 13.6% were unemployed because of COVID-19, 12.2% had been tested for COVID-19, and 0.6% had been hospitalized for COVID-19. Patients who were not on active treatment reported a higher mean number of COVID-19 symptoms (3.1 (± 4.2) versus 1.9 (± 2.6)), and patients who reported a higher number of COVID-19 symptoms were more likely to be tested. Over 55% of the patients were confident that their primary care provider could diagnose COVID-19, and the majority of the patients had high levels of adherence with the use of precautionary measures (e.g., social distancing, use of face coverings). CONCLUSION: The high level of COVID-19 symptoms and the significant overlap of COVID-19 and cancer-related symptoms pose challenges for clinicians who are assessing and triaging oncology patients for COVID-19 testing. For patients on active treatment, clinicians face challenges with how to assess and manage symptoms that, prior to COVID-19, would be ascribed to acute toxicities associated with cancer treatments or persistent symptoms in cancer survivors.

Testicular cancer in Hispanics: incidence of subtypes over time according to neighborhood sociodemographic factors in California.

PURPOSE: Hispanic men in the USA experience the second-highest incidence rate of testicular germ cell tumors (TGCTs), behind non-Hispanic (NH) White men, and have experienced steep increases in TGCT in recent decades. It is unknown whether increases in incidence differ according to neighborhood sociodemographic factors. METHODS: We conducted a population-based study of n = 3759 Hispanic and n = 8469 NH White men (n = 12,228 total) diagnosed with TGCT in California during the three most recent pericensal periods. We calculated incidence rates according to neighborhood socioeconomic status (nSES) and among Hispanics, according to ethnic enclave. We calculated incidence rate ratios to compare rates across nSES and ethnic enclave and to examine changes in rates over pericensal time periods according to these neighborhood factors for major histologic types (i.e., seminoma and nonseminoma). RESULTS: Hispanic men residing in high SES, compared to low SES, neighborhoods had greater incidence of seminoma and nonseminoma testicular cancer across pericensal periods, as did Hispanic men in low enclave (less ethnic), compared to high enclave, neighborhoods. Between the periods 1998-2002 and 2008-2012, Hispanic men residing in low SES neighborhoods experienced a 39% increased incidence of seminoma, while those residing in low and middle SES neighborhoods experienced 87% and 48% increased incidence of nonseminoma, respectively. CONCLUSION: While TGCT incidence has increased among all Hispanic men, incidence increases appear to be driven disproportionately by those residing in lower SES and lower enclave neighborhoods, particularly for nonseminoma.

The limitations of today's clinical guidance: Atypical femoral fracture and long-term bone-modifying agents in the oncology setting.

While bone-modifying agents such as bisphosphonates and denosumab are crucial to preventing skeletal-related events in patients with bone metastases, the optimal duration remains undefined. Extended duration may be associated with adverse effects such as osteonecrosis of the jaw and atypical femoral fracture. Although uncommon, atypical femoral fracture represents a serious consequence of prolonged bone-modifying agent use and are characterized by a prodrome and distinct radiographic findings. The oncology setting encompasses a unique set of atypical femoral fracture risk factors and considerations, with hormonal therapy in early stage disease, bone metastases in the advanced setting, and new targeted agents that may affect bone homeostasis. As outcomes in cancer treatment continue to improve, the questions of risks versus benefits of long-term bone-modifying agents and how to mitigate atypical femoral fracture risk become increasingly pertinent.

Differential use of medical versus surgical androgen deprivation therapy for patients with metastatic prostate cancer.

BACKGROUND: Surgical and medical androgen deprivation therapy (ADT) strategies are comparable in their ability to suppress serum testosterone levels as treatment in patients with metastatic prostate cancer but differ with regard to cost and impact on quality of life. Medical ADT is associated with better long-term quality of life due to the flexibility of possible therapy interruption but comes with a higher cumulative cost. In the current study, the authors examined whether surgical ADT (ie, bilateral orchiectomy) was used differentially by race/ethnicity and other social factors. METHODS: The authors identified patients with metastatic disease at the time of diagnosis through the California Cancer Registry. The association between race/ethnicity and receipt of surgical ADT was modeled using multivariable Firth logistic regression adjusting for age, Gleason score, prostate-specific antigen level, clinical tumor and lymph node classification, neighborhood socioeconomic status (SES), insurance, marital status, comorbidities, initial treatment (radiotherapy, chemotherapy), location of care, rural/urban area of residence, and year of diagnosis. RESULTS: The authors examined a total of 10,675 patients with metastatic prostate cancer, 11.4% of whom were non-Hispanic black, 8.4% of whom were Asian/Pacific Islander, 18.5% of whom were Hispanic/Latino, and 60.5% of whom were non-Hispanic white. In the multivariable model, patients found to be more likely to receive surgical ADT were Hispanic/Latino (odds ratio [OR], 1.32; 95% confidence interval [95% CI], 1.01-1.72), were from a low neighborhood SES (OR, 1.96; 95% CI, 1.34-2.89) or rural area (OR, 1.49; 95% CI, 1.15-1.92), and had Medicaid/public insurance (OR, 2.21; 95% CI, 1.58-3.10). Patients with military/Veterans Affairs insurance were significantly less likely to receive surgical ADT compared with patients with private insurance (OR, 0.34; 95% CI, 0.13-0.88). CONCLUSIONS: Race/ethnicity, neighborhood SES, and insurance status appear to be significantly associated with receipt of surgical ADT. Future research will need to characterize other differences in initial treatments among men with advanced prostate cancer based on race/ethnicity and aim to better understand what factors drive the association between surgical ADT among men of Hispanic origin or those from areas with low neighborhood SES.

Apalutamide and its use in the treatment of prostate cancer.

High-risk nonmetastatic castration-resistant prostate cancer is a lethal disease that previously lacked clear treatment options. Progression to bone metastases is associated with significant morbidity and high cost. Apalutamide, an androgen receptor inhibitor, has substantial clinical response in nonmetastatic castration-resistant prostate cancer. Apalutamide + androgen deprivation therapy is well tolerated and improves metastasis-free survival, progression-free survival and time to symptomatic progression, and is associated with a favorable trend of improved overall survival. Future research is needed to elucidate mechanisms of resistance to treatment with androgen signaling inhibitors.

At What Cost to Clinical Trial Enrollment? A Retrospective Study of Patient Travel Burden in Cancer Clinical Trials.

BACKGROUND: Recent literature suggests that living in a rural setting may be associated with adverse cancer outcomes. This study examines the burden of travel from home to cancer center for clinical trial (CT) enrollees. MATERIALS AND METHODS: Patients from the University of California San Francisco Clinical Trial Management System database who enrolled in a cancer CT for a breast, genitourinary, or gastrointestinal malignancy between 1993 and 2014 were included. Cancer type, household zip code, race/ethnicity, phase of study, study sponsor, and year of signed consent were exported. Distance traveled from home to center was calculated using a GoogleMaps application programming interface. The relationships of distance with phase of CT, household income, and race/ethnicity were examined. RESULTS: A total of 1,600 patients were enrolled in breast (55.8%), genitourinary (29.4%), or gastrointestinal (14.9%) cancer CTs. The overall median unidirectional distance traveled from home to study site was 25.8 miles (interquartile range [IQR] 11.5-75.3). Of the trial sponsors examined, principal investigator (56.4%), industry (22.2%), cooperative group (11.6%), and National Institutes of Health (NIH; 9.8%), the longest distance traveled was for NIH-sponsored trials, with a median of 39.4 miles (p < .001). Phase I (8.4%) studies had the longest distance traveled, with a median of 41.2 miles (IQR 14.5-101.0 miles; p = .001). White patients (83%) traveled longer compared with black patients (4.4%), with median distances of 29.9 and 13.9 miles, respectively (p < .001). Patients from lower-income areas (n = 799) traveled longer distances compared with patients from higher-income areas (n = 773; 58.3 vs. 17.8 miles, respectively; p < .001). A multivariable linear model where log10 (distance) was the outcome and adjusting for the exported variables and income revealed that cancer type, year of consent, race/ethnicity, and income were significantly associated with distance traveled. CONCLUSION: This study found that the burden of travel is highest among patients enrolled in NIH-sponsored trials, phase I studies, or living in low-income areas. These data suggest that travel burden for cancer CT participants may be significant. IMPLICATIONS FOR PRACTICE: This study is one of the first to measure travel distance for patients in cancer clinical trials using a real-world GoogleMaps calculator. Out-of-pocket expenses such as travel are not typically covered by health care payers; therefore, patients may face considerable cost to attend each study visit. Using a single-center clinical trials enrollment database, this study found that the burden of travel is highest for patients enrolled in National Institutes of Health-sponsored trials and phase I studies, as well as for patients living in low-income areas. Results suggest that a significant proportion of patients enrolled in clinical trials face a substantial travel burden.

Incidence of cleft lip and palate in the palestinian territories: a retrospective study from the Makassed Hospital neonatal unit.

BACKGROUND: Cleft lip, with or without cleft palate (CL±P), is the most common craniofacial anomaly in newborns. The incidence of CL±P varies among different ethnic populations and is presumed to be higher in developing countries. In the Middle East, the incidence has variably been reported as 0.3 to 2.19 per 1000 live births and is generally regarded as similar to Caucasians. There is currently no literature reporting the incidence of clefting in Palestinians living in the territories. Reports from Palestinian populations in Israel and Jordan infer an incidence of 1.39 per 1000 live births. However, the reported incidence in stable populations may not reflect the actual incidence of clefting in the territories. METHODS: This is a retrospective study examining all newborn records at Makassed Maternity Hospital in Jerusalem between January 1, 1986, and December 12, 1995. Data were collected by the senior author (A.D.) and interpreted by coauthors. Frequencies were established based on the number of isolated and nonisolated CL±P born during this time period. RESULTS: During the 10-year period from January 1, 1986, to December 12, 1995, there were 33,239 live births. Among these births, there were 35 isolated and nonisolated combined CL±P born (1.05/1000 live births). CONCLUSIONS: Based on this limited data set from a single, tertiary referral hospital, we conclude that the prevalence rate of CL±P among a Palestinian population may be less than that reported in surrounding areas. However, more broadly based studies using nationalized birth registries are required to determine an accurate prevalence rate of CL±P among Palestinians.

Qualitative Study on Internet Use and Care Impact for Black Men With Prostate Cancer.

Black men have a greater risk of prostate cancer as well as worse quality of life and more decisional regret after prostate cancer treatment compared to non-Hispanic White men. Furthermore, patients with prostate cancer who primarily obtain information on the internet have significantly more decisional regret compared to other information sources. Our objective was to explore the perspectives of Black patients on the use and impact of the internet for their prostate cancer care. In 2022-2023, we conducted seven virtual focus groups with Black patients with prostate cancer (n = 22). Transcripts were independently analyzed by two experienced researchers using a constant comparative method. Online sources were commonly used by participants throughout their cancer journey, although informational needs varied over time. Patient factors affected use (e.g., physical health and experience with the internet), and family members played an active role in online information-seeking. The internet was used before and after visits to the doctor. Key topics that participants searched for online included nutrition and lifestyle, treatment options, and prostate cancer in Black men. Men reported many downstream benefits with internet use including feeling more empowered in decision-making, reducing anxiety about treatment and providing greater accountability for research. However, they also reported negative impacts such as feeling overwhelmed or discouraged sorting through the information to identify high-quality content that is personally relevant, as well as increased anxiety or loss of sleep from overuse. In summary, online sources have the potential to positively impact the cancer journey by reinforcing or supplementing information from health care providers, but can be harmful if the information is poor quality, not representative, or the internet is overused.

The costs and inequities of precision medicine for patients with prostate cancer: A call to action.

Financial toxicity is a growing problem in the delivery of cancer care and contributes to inequities in outcomes across the cancer care continuum. Racial/ethnic inequities in prostate cancer, the most common cancer diagnosed in men, are well described, and threaten to widen in the era of precision oncology given the numerous structural barriers to accessing novel diagnostic studies and treatments, particularly for Black men. Gaps in insurance coverage and cost sharing are 2 such structural barriers that can perpetuate inequities in screening, diagnostic workup, guideline-concordant treatment, symptom management, survivorship, and access to clinical trials. Mitigating these barriers will be key to achieving equity in prostate cancer care, and will require a multi-pronged approach from policymakers, health systems, and individual providers. This narrative review will describe the current state of financial toxicity in prostate cancer care and its role in perpetuating racial inequities in the era of precision oncology.