Characterizing "collateral damage" in men and women with metastatic breast cancer (mBC) from diverse racial and ethnic backgrounds in New York City.

PURPOSE: Patients from diverse racial, ethnic, and socio-economic backgrounds may be particularly vulnerable to experiencing undue social and financial burdens ("collateral damage") from a metastatic breast cancer (mBC) diagnosis; however, these challenges have not been well explored in diverse populations. METHODS: From May 2022 to May 2023, English- or Spanish-speaking adults with mBC treated at four New York-Presbyterian (NYP) sites were invited to complete a survey that assessed collateral damage, social determinants of health, physical and psychosocial well-being, and patient-provider communication. Fisher's exact and the Kruskal-Wallis rank-sum tests assessed differences by race and ethnicity. RESULTS: Of 87 respondents, 14% identified as Hispanic, 28% non-Hispanic Black (NHB), 41% non-Hispanic White (NHW), 7% Asian American Pacific Islander (AAPI), and 10% other/multiracial. While 100% of Hispanic, NHW, and AAPI participants reported stable housing, 29% of NHB participants were worried about losing housing (p = 0.002). Forty-two percent of Hispanic and 46% of NHB participants (vs. 8%, NHW and 0%, AAPI, p = 0.005) were food insecure; 18% of Hispanic and 17% of NHB adults indicated lack of reliable transportation in the last year (vs. 0%, NHW/AAPI, p = 0.033). Participants were generally satisfied with the quality of communication that they had with their healthcare providers and overall physical and mental well-being were modestly poorer relative to healthy population norms. CONCLUSIONS: In our study, NHB and Hispanic mBC patients reported higher levels of financial concern and were more likely to experience food and transportation insecurity compared to NHW patients. Systematically connecting patients with resources to address unmet needs should be prioritized to identify feasible approaches to support economically vulnerable patients following an mBC diagnosis.

Racial and Ethnic Differences in Psychosocial Care Use Among Adults With Metastatic Breast Cancer: A Retrospective Analysis Across Six New York City Health Systems.

PURPOSE: A metastatic breast cancer (mBC) diagnosis can affect physical and emotional well-being. However, racial and ethnic differences in receipt of outpatient psychosocial care and supportive care medications in adults with mBC are not well described. METHODS: Adults with mBC were identified in the INSIGHT-Clinical Research Network, a database inclusive of >12 million patients receiving care across six New York City health systems. Outpatient psychosocial care was operationalized using Common Procedure Terminology codes for outpatient psychotherapy or counseling. Psychosocial/supportive care medications were defined using Rx Concept Unique Identifier codes. Associations between race/ethnicity and outpatient care and medication use were evaluated using logistic regression. RESULTS: Among 5,429 adults in the analytic cohort, mean age was 61 years and <1% were male; 53.6% were non-Hispanic White (NHW), 21.4% non-Hispanic Black (NHB), 15.9% Hispanic, 6.1% Asian/Native Hawaiian/Pacific Islander (A/NH/PI), and 3% other or unknown. Overall, 4.1% had ≥one outpatient psychosocial care visit and 63.4% were prescribed ≥one medication. Adjusted for age, compared with NHW, Hispanic patients were more likely (odds ratio [OR], 2.14 [95% CI, 1.55 to 2.92]) and A/NH/PI patients less likely (OR, 0.35 [95% CI, 0.12 to 0.78]) to have an outpatient visit. NHB (OR, 0.59 [95% CI, 0.51 to 0.68]) and Asian (OR, 0.36 [95% CI, 0.29 to 0.46]) patients were less likely to be prescribed medications. CONCLUSION: Despite the prevalence of depression, anxiety, and distress among patients with mBC, we observed low utilization of psychosocial outpatient care. Supportive medication use was more prevalent, although differences observed by race/ethnicity suggest that unmet needs exist.

An evaluation of stakeholder engagement in comparative effectiveness research: lessons learned from SWOG S1415CD.

Aim: Stakeholder engagement is central to comparative effectiveness research yet there are gaps in definitions of success. We used a framework developed by Lavallee et al. defining effective engagement criteria to evaluate stakeholder engagement during a pragmatic cluster-randomized trial. Methods: Semi-structured interviews were developed from the framework and completed to learn about members' experiences. Interviews were analyzed in a deductive approach for themes related to the effective engagement criteria. Results: Thirteen members participated and described: respect for ideas, time to achieve consensus, access to information and continuous feedback as areas of effective engagement. The primary criticism was lack of diversity. Discussion: Feedback was positive, particularly among themes of respect, trust and competence, and led to development of a list of best practices for engagement. The framework was successful for evaluating engagement. Conclusion: Standardized frameworks allow studies to formally evaluate their stakeholder engagement approach and develop best practices for future research.

What is this article about? This article is about the evaluation of how effective the stakeholder engagement was in a comparative effectiveness research (CER) study funded by the Patient Centered Outcomes Research Institute (PCORI). The research team found a framework (developed by Lavalle et al.) that defined six different criteria for effective stakeholder engagement, and used that criteria to complete semi-structured interviews with the stakeholders involved with our study. These interviews were reviewed to determine what stakeholder engagement processes were successful and helped provide a list of best practices for stakeholder engagement for other researchers doing CER. What were the results? Stakeholders highlighted respect for their ideas, time to achieve consensus, easy access to information and a continuous feedback loop between study team and stakeholders as effective engagement processes. What do the results mean? These results can help other researchers doing CER learn best practices to implement from the outset of a study to best engage stakeholders in their research. The results also show that having a standardized framework to evaluate stakeholder engagement is important and allows for research teams to formally evaluate their engagement approach and learn what was successful and where there are areas for improvement in future studies.