Research Project
10271798
SUMMARY/ABSTRACT PROJECT R-2 Ethnoracial Characterization of Patient-Centered Outcomes (Dr. John) Both African American and Hispanic older adults are at greater risk for the development of Alzheimer?s disease and other neurodegenerative disorders (NDD). Improving the identification and measurement of NDD within ethnoracially diverse patients is therefore a public health priority. Neurodegenerative disorders manifest differently across diverse, multicultural groups as a result of disease comorbidities, lifestyle factors, and exposures to discrimination and developmental disadvantages. However, accurate measurement of disease is a necessary precursor for investigating treatment efficacy. Use of patient-centered outcomes can increase the likelihood of minority patient engagement and retention in research. Patient-centered outcomes also increase treatment adherence and improve quality of life. Research in NDD has been slow to embrace and prioritize patient-reported outcome measures. Instead, studies of NDD rely on clinical outcome measures of cognition, behavioral symptoms, and independent functioning, which may be reported only by a caregiver and interpreted by a healthcare provider. Patient and caregiver perceptions of current NDD outcome measures are not well researched, and this is particularly true for ethnoracial minorities. Even among common clinical outcome measures, minimal research exists examining the validity and efficacy within ethnoracial minority samples. The proposed project will utilize an exploratory sequential mixed-methods design to evaluate common clinical trial outcome measures and patient-centered outcomes in NDD within Hispanic and African American participants. We will first evaluate the measurement properties of existing clinical trial outcome measures to ensure that they do not disadvantage ethnoracial minorities. This will allow us to assess the comparability of existing measures across diverse groups. We will then conduct focus groups with ethnoracially diverse patients and community older adults to identify culturally sensitive healthcare concerns and prioritized patient-centered outcomes. Finally, we will evaluate these perceptions and preferences in greater detail through a survey administered to a larger sample of racially diverse community participants and current CNTN patients to evaluate the presence of any group differences that may exist by ethnoracial identity. The findings from these analyses may have profound impact in clinical trials and outcome measurements among older adults with NDD. The study goals outlined above will generate pilot data for future research and will help support the project leader in her application for independent research funding.
