Evaluating PROMIS Physical Function Measures in Older Adults at Risk for Alzheimer’s Disease

Activities of daily living can be affected by cognitive decline. Self-report measurement of functioning is attractive due to ease of data collection, low cost, and accessibility via technology-assisted means, and for understanding patient perspective. A concern is with reliability of such measurement as cognitive decline occurs. We compared a widely used, self-report “legacy” measure of functioning, Lawton and Brody’s Instrumental Activities of Daily Living Scale (IADLS), with a subset of physical functioning items from the Patient-Reported Outcomes Measurement Information System (PROMIS). The study sample consisted of 304 individuals of varying cognitive status: normal, mild cognitive impairment (MCI), or early dementia. An expert consensus method was used to select PROMIS functional items most relevant to neurocognitive disorder and to identify major functional sub-domains. Selected PROMIS functional subscales and the IADLS were then evaluated with respect to cognitive status. Few PROMIS functional items were useful in identifying MCI, while we reaffirmed the utility of the IADLS. Also, even mild depression levels were found to have negative effects on functioning according to both PROMIS and IADLS

Using Community-Based Participatory Research Principles to Develop More Understandable Recruitment and Informed Consent Documents in Genomic Research

<div><p>Background</p><p>Heart Healthy Lenoir is a transdisciplinary project aimed at creating long-term, sustainable approaches to reduce cardiovascular disease risk disparities in Lenoir County, North Carolina using a design spanning genomic analysis and clinical intervention. We hypothesized that residents of Lenoir County would be unfamiliar and mistrustful of genomic research, and therefore reluctant to participate; additionally, these feelings would be higher in African-Americans.</p><p>Methodology</p><p>To test our hypothesis, we conducted qualitative research using community-based participatory research principles to ensure our genomic research strategies addressed the needs, priorities, and concerns of the community. African-American (n = 19) and White (n = 16) adults in Lenoir County participated in four focus groups exploring perceptions about genomics and cardiovascular disease. Demographic surveys were administered and a semi-structured interview guide was used to facilitate discussions. The discussions were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti.</p><p>Results and Significance</p><p>From our analysis, key themes emerged: transparent communication, privacy, participation incentives and barriers, knowledge, and the impact of knowing. African-Americans were more concerned about privacy and community impact compared to Whites, however, African-Americans were still eager to participate in our genomic research project. The results from our formative study were used to improve the informed consent and recruitment processes by: 1) reducing misconceptions of genomic studies; and 2) helping to foster participant understanding and trust with the researchers. Our study demonstrates how community-based participatory research principles can be used to gain deeper insight into the community and increase participation in genomic research studies. Due in part to these efforts 80.3% of eligible African-American participants and 86.9% of eligible White participants enrolled in the Heart Healthy Lenoir Genomics study making our overall enrollment 57.8% African-American. Future research will investigate return of genomic results in the Lenoir community.</p></div