Development of the computer-adaptive version of the Late-Life Function and Disability Instrument.

BACKGROUND: Having psychometrically strong disability measures that minimize response burden is important in assessing of older adults. METHODS: Using the original 48 items from the Late-Life Function and Disability Instrument and newly developed items, a 158-item Activity Limitation and a 62-item Participation Restriction item pool were developed. The item pools were administered to a convenience sample of 520 community-dwelling adults 60 years or older. Confirmatory factor analysis and item response theory were employed to identify content structure, calibrate items, and build the computer-adaptive testings (CATs). We evaluated real-data simulations of 10-item CAT subscales. We collected data from 102 older adults to validate the 10-item CATs against the Veteran's Short Form-36 and assessed test-retest reliability in a subsample of 57 subjects. RESULTS: Confirmatory factor analysis revealed a bifactor structure, and multi-dimensional item response theory was used to calibrate an overall Activity Limitation Scale (141 items) and an overall Participation Restriction Scale (55 items). Fit statistics were acceptable (Activity Limitation: comparative fit index = 0.95, Tucker Lewis Index = 0.95, root mean square error approximation = 0.03; Participation Restriction: comparative fit index = 0.95, Tucker Lewis Index = 0.95, root mean square error approximation = 0.05). Correlation of 10-item CATs with full item banks were substantial (Activity Limitation: r = .90; Participation Restriction: r = .95). Test-retest reliability estimates were high (Activity Limitation: r = .85; Participation Restriction r = .80). Strength and pattern of correlations with Veteran's Short Form-36 subscales were as hypothesized. Each CAT, on average, took 3.56 minutes to administer. CONCLUSIONS: The Late-Life Function and Disability Instrument CATs demonstrated strong reliability, validity, accuracy, and precision. The Late-Life Function and Disability Instrument CAT can achieve psychometrically sound disability assessment in older persons while reducing respondent burden. Further research is needed to assess their ability to measure change in older adults.

Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility.

BACKGROUND: The increased availability of genetic tests for common, complex diseases, such as Alzheimer's disease (AD), raises questions about what people are willing to pay for these services. METHODS: We studied willingness-to-pay for genetic testing in a study of AD risk assessment that included APOE genotype disclosure among 276 first-degree relatives of persons with AD. RESULTS: Seventy-one percent reported that they would ask for such testing from their doctor if it were covered by health insurance, and 60% would ask for it even if it required self-pay. Forty-one percent were willing to pay more than $100 for testing, and more than half would have been willing to pay for the test out of pocket. Participants who learned that they were APOE ε4 positive and those who had higher education were less likely to want testing if covered by insurance, possibly to avoid discrimination. CONCLUSION: This is the first report to examine willingness to pay for susceptibility genetic testing in a sample of participants who had actually undergone such testing. These findings reveal that some participants find valuable personal utility in genetic risk information even when such information does not have proven clinical utility.