Prognosis Communication in Late-Life Disability: A Mixed Methods Study.

IMPORTANCE: Long-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm. OBJECTIVE: To explore the safety of and reactions to prognosis communication in late-life disability. DESIGN: Participants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later. SETTING: Community-dwelling older adults age 70+ residing in the San Francisco Bay Area. PARTICIPANTS: Thirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living. RESULTS: Self-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare. CONCLUSIONS AND RELEVANCE: About half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.

Bringing functional status into a big data world: Validation of national Veterans Affairs functional status data.

BACKGROUND: The ability to perform basic daily activities ("functional status") is key to older adults' quality of life and strongly predicts health outcomes. However, data on functional status are seldom collected during routine clinical care in a way that makes them available for clinical use and research. OBJECTIVES: To validate functional status data that Veterans Affairs (VA) medical centers recently started collecting during routine clinical care, compared to the same data collected in a structured research setting. DESIGN: Prospective validation study. SETTING: Seven VA medical centers that collected complete data on 5 activities of daily living (ADLs) and 8 instrumental activities of daily living (IADLs) from older patients attending primary care appointments. PARTICIPANTS: Randomly selected patients aged 75 and older who had new ADL and IADL data collected during a primary care appointment (N = 252). We oversampled patients with ADL dependence and applied these sampling weights to our analyses. MEASUREMENTS: Telephone-based interviews using a validated measure to assess the same 5 ADLs and 8 IADLs. RESULTS: Mean age was 83 years, 96% were male, and 75% were white. Of 85 participants whom VA data identified as dependent in 1 or more ADLs, 74 (87%) reported being dependent by interview; of 167 whom VA data identified as independent in ADLs, 149 (89%) reported being independent. The sample-weighted sensitivity of the VA data for identifying ADL dependence was 45% (95% CI, 29%, 62%) compared to the reference standard, the specificity was 99% (95% CI, 99%, >99%), and the positive predictive value was 87% (95% CI, 79%, 93%). The weighted kappa statistic was 0.55 (95% CI, 0.41, 0.68) for the agreement between VA data and research-collected data in identifying ADL dependence. CONCLUSION: Overall agreement of VA functional status data with a reference standard was moderate, with fair sensitivity but high specificity and positive predictive value.

"Everyone else gets ice cream here more often than I do--It burns me up"--Perspectives on Diabetes Care from Nursing Home Residents and their Doctors.

BACKGROUND: To explore the perspectives of nursing home (NH) residents with diabetes and their doctors regarding the burdens of living with diabetes and diabetes treatments. METHODS: Qualitative study of nursing home residents aged 65 and older with diabetes (n = 14) and nursing home physicians (n = 9) at a Department of Veterans Affairs nursing home (known as the Community Living Center). A semi-structured interview was used to elicit nursing home residents' and physicians' perspectives on the burden of diabetes and diabetes treatments. Transcripts were analyzed using constant comparative methods. RESULTS: The mean age of the nursing home residents was 74; Most (93%) were male and 50% self-identified themselves as white. The mean age of nursing home physicians was 39 and 55% were geriatricians. Dietary restrictions, loss of independence and fingersticks/insulin were noted to be the most burdensome aspects of diabetes. Nursing home residents with a more positive outlook were generally more engaged in their care, while nursing home residents with a more pessimistic outlook were less engaged, allowing their physicians to assume complete control of their care. While physicians noted the potential negative impact of dietary restrictions, nursing home residents' comments suggest that physicians underestimate the burden of dietary restrictions. CONCLUSIONS: Veterans Affairs nursing home residents were substantially burdened by their diabetes treatments, especially dietary restrictions and fingerstick monitoring. Since there is little evidence that dietary restrictions improve outcomes, fewer dietary restrictions may be appropriate and lead to lower treatment burdens for nursing home residents with diabetes.