Poster - #VH-78988 - Keywords: aphasia, stroke, impacts

The Impacts of Aphasia Defined by Stakeholders: Developing a Patient-Centered Core Impact Set for Aphasia in the US

Jackie Hinckley & Maura Silverman
National Aphasia Association & Nova Southeastern University

ABSTRACT:
As the voices of people living with aphasia become more prominent, the chasm between their concerns and needs and research-based clinical recommendations has become apparent. Currently there is no clear source which helps researchers and clinicians prioritize these consequences for investigation or intervention development. A systematic, validated process for identifying core impacts and research priorities is needed to address the chronic, lifelong issues associated with living with aphasia. Fortunately, the National Health Council has developed a validated Blueprint for developing a Patient-Centered Core Impact Set (PC-CIS). A Core Outcome Set is developed by researchers and clinicians to identify useful and meaningful outcome measures. A Core Impact Set is developed by people with aphasia and their families and friends to identify the most important impacts of living with aphasia (Perfetto et al, 2022, 2023). This poster will describe the steps and process for developing a PC-CIS for aphasia in the United States. This project is being undertaken by the National Aphasia Association and current status of the project will be reported. The basic steps include: a) seek and evaluate existing data on impacts of aphasia  b) engage a diverse group of stakeholders in an initial prioritization process  c) conduct an environmental scan of other existing sources of knowledge about impacts and identify missing areas  d) complete a final prioritization with a second diverse group of stakeholders that preserves the initial priorities. The development of a Core Impact Set for Aphasia in the US is an important collaborative project because the outcomes can be used by aphasia programs and centers, researchers, policymakers, clinicians, administrators, funders, and others to ensure that resources, programs, and research addresses the most debilitating consequences of aphasia as identified by the people who are living with them.