Validation of Self-reported Cancer Diagnoses Using Medicare Diagnostic Claims in the US Health and Retirement Study, 2000-2016

Cancer Epidemiol Biomarkers Prev. 2022 Jan;31(1):287-292. doi: 10.1158/1055-9965.EPI-21-0835. Epub 2021 Nov 4.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Validation Study

MeSH terms

  • Aged
  • Aged, 80 and over
  • Cohort Studies
  • Female
  • Humans
  • Insurance Claim Review
  • Male
  • Medicare
  • Middle Aged
  • Neoplasms / diagnosis*
  • Neoplasms / epidemiology*
  • Retirement
  • Self Report*
  • United States / epidemiology