Using Community-Based Participatory Research to Develop Care Recommendations for People Aging With HIV.

Background and Objectives: Over 50% of New Yorkers living with human immunodeficiency virus (HIV) are 50 years old or older, and the emotional and physical consequences of being a long-term survivor are significant. This study aimed to identify the practical needs of long-term survivors and older people with HIV (consumers) in New York State and develop recommendations addressing those needs. Research Design and Methods: The HIV + Aging/LTS/Perinatally Diagnosed Subcommittee of the Consumer Advisory and Quality Advisory committees in the New York State AIDS Institute used community-based participatory research (CBPR) methods to design a statewide survey about the care needs of consumers in New York State. This survey, open to consumers, clinicians, and supportive services providers, was launched in June 2021 using Qualtrics. Participants provided demographic data and chose the 3 most important barriers and recommendations from each of 10 categories of issues affecting health care and supportive services. Consumers provided information about their HIV diagnosis and other health conditions. Responses were characterized using basic descriptive statistics. Results: Participants included 124 consumers from 26 counties, 20 clinicians, and 24 supportive service providers. Among consumers, 67% were cisgender men, 27% were African American, and 65% were both long-term survivors and older people with HIV. On average consumers had been diagnosed with HIV for 27 years. Participants were concerned with clinical care coordination, housing needs, cultural representation in mental health services, and financial support of consumers. Discussion and Implications: CBPR is an effective approach to developing consumer-generated recommendations to improve HIV care for long-term survivors and older people with HIV. Town hall formats informed survey design, enabled broad coverage of topics, and ensured that focus remained on priorities most important to consumers. The first quality initiative arising from the study was a routine screening of long-term survivors of HIV to identify functional decline and enhance referral pathways and care linkages.

Reducing Intersecting Stigmas in HIV Service Organizations: An Implementation Science Model.

BACKGROUND: HIV-related and intersectional stigmas are key barriers for service delivery, but best practices are nascent for addressing them in high-resource and high-burden contexts such as New York City (NYC). The Stigma Reduction and Resilience (STAR) implementation science (IS) Mapping Project in 2020 identified untested stigma reduction efforts in HIV organizations, highlighting the need for an IS framework. SETTING: Organizations providing HIV prevention and/or care in NYC. METHODS: An interagency team determined that IS provides a structured approach for addressing identified gaps in stigma reduction efforts, but defining existing IS concepts and adapting IS frameworks were necessary to facilitate its use. The Implementation Research Logic Model was adapted to empower HIV organizations to use IS to implement stigma reduction. RESULTS: Questions, definitions, and tips were developed to guide, strengthen, and simplify the application of IS within HIV organizations to improve the reduction of HIV and intersecting stigmas. The resulting Stigma Reduction Logic Model incorporates tools for implementers who synthesize each component of the logic model (intervention, determinants, implementation strategies, mechanisms, and outcomes), including a menu of options for selecting stigma reduction interventions and implementation determinants, a checklist to assess organizational readiness for stigma reduction, and an IS terminology guide applied for stigma reduction. CONCLUSIONS: Stigma reduction initiatives and research can use this model to enable implementers, researchers, and HIV organization stakeholders to use the methodology of IS to build consensus for, systematically plan, implement, and evaluate stigma reduction activities relevant to the HIV epidemic. The next step is testing the model's utility.

HIV and Intersectional Stigma Reduction Among Organizations Providing HIV Services in New York City: A Mixed-Methods Implementation Science Project.

Stigma remains a pervasive barrier to Ending the HIV Epidemic (EHE) in New York City (NYC). As part of an EHE implementation science planning process, we mapped multi-level HIV-related stigma-reduction activities, assessed their evidence base, and characterized barriers and facilitators. We interviewed and surveyed a convenience sample of 27 HIV prevention and/or treatment services organizations in NYC, March-August, 2020, using an embedded mixed-methods design. The greatest facilitators of stigma reduction included integration of health services, hiring staff who represent the community, and trainings. Intersecting stigmas were primarily addressed through the integration of HIV with mental health and substance use services. Barriers were multilevel, with organizational structure and capacity most challenging. A strong base of stigma-reduction activities was utilized by organizations, but intersectional frameworks and formal evaluation of activities' impact on stigma were lacking. Effectiveness-implementation hybrid research designs are needed to evaluate and increase the uptake of effective stigma-reduction approaches in NYC.

Prognostic factors and treatment options in patients with leptomeningeal metastases of different primary tumors: a retrospective analysis.

PURPOSE: Leptomeningeal metastases (LM) are associated with very poor prognosis and data on outcome are limited. We evaluated prognostic factors and treatment options in patients (pts) with LM of different malignancies in a single center experience. METHODS: Single center data on characteristics, treatment and outcome of 135 consecutive pts (73 solid tumors and 62 hematologic malignancies) with LM between 1989 and 2005 were retrospectively analyzed. RESULTS: Treatment consisted of systemic chemotherapy (SC) plus intrathecal chemotherapy (ITC) in 28%, ITC alone in 22%, radiotherapy (RT) plus ITC in 12% and other modalities (SC, RT, SC + RT) in 7%. Thirteen percent of pts received supportive care only (4% not evaluable on treatment). Median survival from diagnosis of LM was 2.5 months. Univariate analysis revealed age >50, interval between diagnosis of primary tumor and LM ≤12 months, lung cancer and malignant melanoma, and Karnofsky performance status ≤70 as significant negative predictors for overall survival. Positive predictive factors were response in cerebrospinal fluid and application of SC. In multivariate analysis, only SC was significantly associated with longer median survival (5.6 vs. 1.7 months). CONCLUSIONS: In patients with LM an age >50, performance status ≤70%, interval between diagnosis of primary tumor and LM ≤12 months, primary tumor (lung cancer, malignant melanoma) and lack of cytologic response present negative prognostic factors. Systemic chemotherapy is significantly associated with longer survival time than local treatment modalities.