Research manager Baylor College of Medicine Houston, Texas, United States
Studies integrating precision medicine into Alzheimer’s disease and related dementias (AD/ADRD) care include neuroimaging (brain MRI, amyloid PET), genome sequencing, and standardized cognitive assessments. The goal is to identify risk factors and improve early diagnosis and treatment. Disclosure of genetic AD risk has not shown significant negative psychological outcomes compared to controls, but the impact of neuroimaging and genetic testing disclosed together is understudied. Additionally, subtler impacts, such as worry, which is linked to worse cognitive outcomes in individuals diagnosed with dementia, may be overlooked. We are enrolling diverse patient-participants and study partners from the Houston community and neurology outpatient clinics to a precisions medicine study of AD/ADRD. Enrollees complete surveys before and six weeks after results disclosure. We assess dementia worry using the Modified Dementia Worry Scale (MDWS), a 12-item scale with summed scores ranging from 12-60 where higher scores indicate more worry.
Fifty-two patient-participants are currently enrolled; 28% self-describe as Hispanic/Latino, 17% as Black/African American. Thirty-five have completed testing. Seventeen (49%) had no cognitive impairment. Twenty-seven (77%) had genetic tests indicating increased AD risk. Eleven out of twenty-five who had PET scans (44%) had positive amyloid. Patient participant and study partner post-survey MDWS scores increased from pre-surveys by 1 to 3 points, respectively. Overall scores remained in the bottom quartile of the scale, indicating low worry levels (post-survey average patient-participant score, 22.3; average study partner score, 19.7). Understanding the impact on patient-participant and study partner worry is necessary to ethically implement this technology in AD care.
