Design and development of the first randomized controlled trial of an intervention (IDEA) for sexual and gender minority older adults living with dementia and care partners.

BACKGROUND: Heightened risks of cognitive impairment, disability, and barriers to care among sexual and gender minority (SGM) older adults are well documented. To date, culturally responsive evidence-based dementia interventions for this population do not exist. OBJECTIVE: This study describes the design of the first randomized controlled trial (RCT) testing a culturally responsive cognitive behavioral and empowerment intervention, Innovations in Dementia Empowerment and Action (IDEA), developed to address the unique needs of SGM older adults living with dementia and care partners. METHODS: IDEA is a culturally enhanced version of Reducing Disability in Alzheimer's Disease (RDAD), an efficacious, non-pharmaceutical intervention for people with dementia and care partners. We utilized a staggered multiple baseline design with the goal to enroll 150 dyads randomized into two arms of 75 dyads each, enhanced IDEA and standard RDAD. RESULTS: IDEA was adapted using findings from the longitudinal National Health, Aging, and Sexuality/Gender study, which identified modifiable factors for SGM older adults, including SGM-specific discrimination and stigma, health behaviors, and support networks. The adapted intervention employed the original RDAD strategies and enhanced them with culturally responsive empowerment practices designed to cultivate engagement, efficacy, and support mobilization. Outcomes include adherence to physical activity, reduction in perceived stress and stigma, and increased physical functioning, efficacy, social support, engagement, and resource use. CONCLUSION: IDEA addresses contemporary issues for underserved populations living with dementia and their care partners. Our findings will have important implications for marginalized communities by integrating and evaluating the importance of cultural responsiveness in dementia and caregiving interventions.

Preappointment testing for BRAF/KIT mutation in advanced melanoma: a model in molecular data delivery for individualized medicine.

The emergence of individualized medicine is driven by developments in precision diagnostics, epitomized by molecular testing. Because treatment decisions are being made based on such molecular data, data management is gaining major importance. Among data management challenges, creating workflow solutions for timely delivery of molecular data has become pivotal. This study aims to design and implement a scalable process that permits preappointment BRAF/KIT mutation analysis in melanoma patients, allowing molecular results necessary for treatment plans to be available before the patient's appointment. Process implementation aims to provide a model for efficient molecular data delivery for individualized medicine. We examined the existing process of BRAF/KIT testing in melanoma patients visiting our institution for oncology consultation. We created 5 working groups, each designing a specific segment of an alternative process that would allow preappointment BRAF/KIT testing and delivery of results. Data were captured and analyzed to evaluate the success of the alternative process. For 1 year, 35 (59%) of 55 patients had prior BRAF/KIT testing. The remaining 20 patients went through the new process of preappointment testing; results were available at the time of appointment for 12 patients (overall preappointment results availability, 85.5%). The overall process averaged 13.4 ± 4.7 days. In conclusion, we describe the successful implementation of a scalable workflow solution that permits preappointment BRAF/KIT mutation analysis and result delivery in melanoma patients. This sets the stage for further applications of this model to other conditions, answering an increasing demand for robust delivery of molecular data for individualized medicine.