Validation of Self-reported Cancer Diagnoses Using Medicare Diagnostic Claims in the US Health and Retirement Study, 2000–2016
Megan A. Mullins, Jasdeep S. Kler, Marisa R. Eastman, Mohammed U. Kabeto, Lauren P. Wallner, Lindsay C. Kobayashi
Abstract
BACKGROUND: The US Health Retirement Study (HRS) is an ongoing population-representative cohort of US adults ages >50 with rich data on health during aging. Self-reported cancer diagnoses have been collected since 1998, but they have not been validated. We compared self-reported cancer diagnoses in HRS interviews against diagnostic claims from linked Medicare records. METHODS: Using HRS-Medicare linked data, we examined the validity of first incident cancer diagnoses self-reported in biennial interviews from 2000 to 2016 against ICD-9 and ICD-10 diagnostic claim records as the gold standard. Data were from 8,242 HRS participants ages ≥65 with 90% continuous enrollment in fee-for-service Medicare. We calculated the sensitivity, specificity, and κ for first incident invasive cancer diagnoses (all cancers combined, and each of bladder, breast, colorectal/anal, uterine, kidney, lung, and prostate cancers) cumulatively over the follow-up and at each biennial study interview. RESULTS: Overall, self-reports of first incident cancer diagnoses from 2000 to 2016 had 73.2% sensitivity and 96.2% specificity against Medicare claims (κ = 0.73). For specific cancer types, sensitivities ranged from 44.7% (kidney) to 75.0% (breast), and specificities ranged from 99.2% (prostate) and 99.9% (bladder, uterine, and kidney). Results were similar in sensitivity analyses restricted to individuals with 100% continuous fee-for-service Medicare enrollment and when restricted to individuals with at least 24 months of Medicare enrollment. CONCLUSIONS: Self-reported cancer diagnoses in the HRS have reasonable validity for use in population-based research that is maximized with linkage to Medicare. IMPACT: These findings inform the use of the HRS for population-based cancer and aging research.