The representation of racial and ethnic minority populations in clinical trials continues to be a challenge despite mandates, good intentions, and concerted efforts by funding agencies, regulatory ...bodies, and researchers to close the clinical trials gap. A lack of diversity in research results in both continued disparities and poorer health outcomes. It is thus imperative that investigators understand and effectively address the challenges of clinical trials participation by underrepresented populations. In this paper, we expound upon best practices for participatory research by clearly defining the community, highlighting the importance of proper identification and engagement of strong community partners, and exploring patient and provider-level barriers and facilitators that require consideration. A clearer understanding of the balance of power between researchers and community partners is needed for any approach that addresses clinical trials representation. Unintended biases in study design and methods may continue to prevent racial and ethnic minority participants from taking part and significant organizational changes are necessary for efficient and transparent relationships. Comprehensive community engagement in research includes dissemination of clinical trial results within and in partnership with community partners. Through careful deliberation and honest reflection, investigators, institutions, and community partners can develop the tailored blueprints of research collaborations essential for true equity in clinical trials.
Purpose
To assess differences in baseline and longitudinal quality of life among Black and White individuals in the US with advanced prostate cancer.
Methods
Secondary analysis of data from the ...International Registry for Men with Advanced Prostate Cancer (IRONMAN) including US participants newly diagnosed with advanced prostate cancer and identifying their race as Black or White from 2017 to 2023. Participants completed the EORTC QLQ-C30 Quality of Life (QoL) Survey at study enrollment and every 3 months thereafter for up to 1 year of follow-up reporting 15 scale scores ranging from 0 to 100 (higher functioning and lower symptom scores represent better quality of life). Linear mixed effects models with race and month of questionnaire completion were fit for each scale, and model coefficients were used to assess differences in baseline and longitudinal QoL by race.
Results
Eight hundred and seventy-nine participants were included (20% identifying as Black) at 38 US sites. Compared to White participants at baseline, Black participants had worse constipation (mean 6.3 percentage points higher; 95% CI 2.9–9.8), financial insecurity (5.7 (1.4–10.0)), and pain (5.1 (0.9–9.3)). QoL decreased over time similarly by race; most notably, role functioning decreased by 0.7 percentage points (95% CI −0.8, −0.5) per month.
Conclusion
There are notable differences in quality of life at new diagnosis of advanced prostate cancer for Black and White individuals, and quality of life declines similarly in the first year for both groups. Interventions that address specific aspects of quality of life in these patients could meaningfully improve the overall survivorship experience.
The National Cancer Institute's (NCI) Cancer Center Support Grants (CCSGs) encourages Cancer Centers to address health disparities and reduce the cancer burden in their Catchment Area (CA) through an ...organized Community Outreach and Engagement (COE) structure. This paper shares the development of two guide models that fosters the operations of the Mayo Clinic Comprehensive Cancer Center (MCCCC) COE Office and programs, the MCCCC COE Impact Model and the MCCCC COE Logic Model.
Following a less than stellar CCSG rating for COE in 2018, the MCCCC developed a transition team to specifically address the critique and create a transformative plan for engaging communities to address cancer burden in the CA. A qualitative research approach was employed, focusing on organizing and displaying the relationship between MCCCC COE processes and outcomes through impact and logic models. An impact model was developed to illustrate the components of the CCSG and connect those components to short- and long-term COE outcomes. A logic model was developed to track and monitor activities for continuous process improvement for all COE activities.
The impact and logic model serve as a roadmap to monitor progress towards short- and long-term COE goals of the MCCCC. The COE operational strategies draw upon bidirectional partnership, evidence-based practices, and research facilitation to respond to the CCSG critique.
These strategies demonstrate successful practices in addressing cancer burden, promoting health equity and eliminating cancer disparities in the MCCCC CA.
African-American women continue to be disproportionately affected by HIV-related morbidity and mortality. To address the burden of HIV/AIDS among this at-risk population, there is need to gain a ...better understanding of the factors that influence and affect their care-seeking behavior and specifically adherence to antiretroviral treatment. A preliminary qualitative study was conducted with a sample of the target population (n = 10) using grounded theory as the methodological approach. Similarly, 21 healthcare providers - physicians, pharmacists, nurses, and case managers - were then interviewed. A thematic analysis of the transcripts compared care-provider perceptions and narrated experiences with those from the patient participants. Themes related to patient care perceived to enhance medication adherence included (1) provider-patient relationship; (2) holistic and patient-centered care; (3) adequacy of patient education and counseling; (4) modeling adherence behavior; and (5) motivation. Two intervention strategies are proposed - Peer educators as an integral part of the care team and Patient Advisory Groups as a feedback mechanism to enhance effective delivery of patient care in the target population. This exploratory research lays a foundation for the design of targeted interventions to improve linkage to care and enhance medication adherence in African-American women living with HIV/AIDS.
Objective
The purpose of this study was to assess differences in reported information about treatment, integration into care, and respect by self‐identified Black and White individuals with advanced ...prostate cancer in the United States.
Patients and Methods
This is a prospective cohort study of 701 participants (20% identifying as Black) enrolled in the International Registry for Men with Advanced Prostate Cancer at 37 US sites from 2017 to 2022. Participants were asked six questions from the Cancer Australia National Cancer Control Indicators about their experience with care at study enrollment. Prevalence differences by self‐reported race were estimated using marginal standardization of logistic‐normal mixed effects models (adjusted for age at enrollment and disease state at enrollment), and 95% CIs were estimated using parametric bootstrapping.
Results
Most participants reported a high quality of care for each question. Black participants generally reported higher care quality compared with White participants. Black participants reported more frequently that they were offered a written assessment and care plan (71%) compared with White participants (58%; adjusted difference, 13 percentage points; 95% CI, 4–23). Black participants also reported more frequently being given the name of nonphysician personnel who would support them (64%) than White participants (52%; adjusted difference, 10; 95% CI, 1–20). Prevalence differences did not differ by disease state at enrollment.
Conclusions
Black participants generally reported a higher quality of care compared with White participants. This study calls attention to the need to study potential mediating factors and interpersonal aspects of care in this population to improve survivorship.
Patients with advanced prostate cancer in the United States reported a high quality of care. Black participants tended to report higher quality of care compared with White participants regarding information about treatment, integration into care, and respect for patient preference.
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