CARES: A Caregiver-Facing Digital Symptom Assessment Tool for Marginalized Older Adults with Serious Illness
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PROJECT SUMMARY This K76 proposal describes the five-year career development plan of Dr. Sarah Nouri, an Assistant Professor in the Division of Palliative Medicine at the University of California San Francisco (UCSF). Dr. Nouri's long-term career goal is to become a leader in ensuring equitable access to high-quality serious illness care for marginalized older adults. Millions of older adults in the US have serious illness and suffer due to poorly controlled symptoms, such as pain and shortness of breath. These symptoms are difficult to monitor and often result in emergency room visits, particularly for the >7 million homebound older adults who rely on caregivers. Homebound older adults are more likely to have cognitive impairment or Alzheimer's Disease or Alzheimer's Disease Related Dementias (CI/ADRD), be economically disadvantaged, and be racially or ethnically minoritized. Caregivers experience distress related to older adults' symptom burden because of challenges assessing symptom severity and knowing when and how to reach out to patients' primary care teams for support. Dr. Nouri previously evaluated a caregiver-facing, paper-based Symptom Assessment (SA) Toolkit and found it was acceptable and usable. However, study participants reported needing: 1) support for CI/ADRD-unique neuropsychiatric symptoms (e.g., behavior and sleep disturbances), 2) clarification of primary care workflows for symptom follow-up, and 3) a digital solution. Other remote symptom tools focus on people with cancer and not older adults, exclude those with CI/ADRD, are not caregiver-facing, and were not created with racially, ethnically, or socioeconomically diverse populations. To address these gaps, Dr. Nouri proposes co-development and evaluation of a digital symptom assessment tool with caregivers and primary care teams of homebound, Medicaid-enrolled older adults with serious illness (including CI/ADRD). The aims are to: 1) adapt the SA-Toolkit content to include unique CI/ADRD-related symptoms and define an ideal implementation strategy, 2) co-design a digital Caregiver Empowerment and Symptom Assessment tool (CARES) with caregivers and primary care teams, and 3) conduct pilot feasibility testing of CARES. These objectives support Dr. Nouri's career development activities focused on implementation science: 1) advanced qualitative methods, 2) intervention development with user-centered design methods, and 3) randomized trial design. Dr. Nouri will conduct all work at UCSF with an exceptional mentoring team led by Dr. Rebecca Sudore. This proposal will provide Dr. Nouri with the training and resources to develop the first digital symptom assessment tool to empower caregivers of homebound older adults, including those with CI/ADRD. It will also lay the groundwork for a randomized controlled trial of CARES and continued development of novel care delivery models to meet the growing serious illness care needs of older adults. It will also provide advanced research and leadership skills to launch Dr. Nouri's career as an independent investigator and leader at the intersection of aging research, palliative medicine, and health equity for marginalized older adult populations.
