%0 Journal Article %J Cancer Epidemiology, Biomarkers & Prevention %D 2022 %T Validation of self-reported cancer diagnoses using Medicare diagnostic claims in the U.S. Health and Retirement Study, 2000-2016. %A Megan Mullins %A Jasdeep S Kler %A Eastman, Marisa R %A Mohammed U Kabeto %A Lauren P Wallner %A Lindsay C Kobayashi %K cancer diagnoses %K medicare diagnostic claims %K Self-reported health %X

BACKGROUND: The US Health Retirement Study (HRS) is an ongoing population-representative cohort of US adults aged >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 2000-2016 against ICD-9 and ICD-10 diagnostic claim records as the gold standard. Data were from 8,242 HRS participants aged {greater than or equal to}65 with 90% continuous enrollment in fee-for-service Medicare. We calculated the sensitivity, specificity, and k 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 2000-2016 had 73.2% sensitivity and 96.2% specificity against Medicare claims (k=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 restricting to individuals with 100% continuous fee-for-service Medicare enrollment and when restricting to individuals with at least 24 months of Medicare enrollment.

CONCLUSION: 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.

%B Cancer Epidemiology, Biomarkers & Prevention %V 31 %P 287-292 %G eng %N 1 %1 http://www.ncbi.nlm.nih.gov/pubmed/34737206?dopt=Abstract %R 10.1158/1055-9965.EPI-21-0835 %0 Journal Article %J Journal of Clinical Oncology %D 2021 %T Validation of self-reported incident cancer diagnoses in the U.S. Health and Retirement Study: A tool for population-based cancer and aging research. %A Megan Mullins %A Jasdeep S Kler %A Eastman, Marissa %A Mohammed U Kabeto %A Lauren P Wallner %A Lindsay C Kobayashi %K biomarker data %K cancer diagnoses %K Medicare %K self-report %X Background: Population aging and improving cancer survival rates are resulting in a growing population of older cancer survivors in the United States (US). As a result, there is an increasing need for longitudinal, population-representative data for interdisciplinary cancer research among older adults. The US Health Retirement Study (HRS) is an ongoing population-representative cohort of US adults over age 50 that contains rich interview and biomarker data on health during aging. Interviews have collected self-reported cancer diagnoses since 1998, but these self-reports have not been validated. We compared first incident cancer diagnoses self-reported in HRS interviews against diagnostic claims from linked Medicare records. Methods: We examined the validity of first incident cancer diagnoses self-reported in biennial HRS interviews from 2000 through 2016 against ICD-9 and ICD-10 diagnostic claim records among 8,242 HRS participants aged ≥65 with 90% continuous enrollment in fee-for-service Medicare, using the claim records as the gold standard. We calculated the sensitivity, specificity, and k for first incident cancer diagnoses (all cancers combined, excluding non-melanoma skin cancer, and each of bladder, breast, colorectal/anal, uterine, kidney/renal, lung/bronchus, and prostate cancers) cumulatively over the follow-up, and at each biennial study interview. Results: Self-reports of first incident cancer diagnosis (agnostic of site) between 2000 and 2016 had 73.2% sensitivity and 96.2% specificity against Medicare claims (k = 0.73). For site-specific self-reports, sensitivities ranged from 44.7% (kidney) to 75.0% (breast), and specificities ranged from 99.2% (prostate) to 99.9% (bladder, uterine, and kidney). Results were similar in sensitivity analyses restricting to individuals with 100% continuous fee-for-service Medicare enrollment and when restricting to individuals with at least 24 months of Medicare enrollment. Conclusions: Self-reported cancer diagnoses in the HRS have reasonable validity for population-based research on cancer and aging across cancer types. Apart from breast cancer, cancer site specific analyses will greatly benefit from the improved validity of self-report with Medicare claim linkage. %B Journal of Clinical Oncology %V 39 %P 312 %G eng %N 28_suppl %R 10.1200/JCO.2020.39.28_suppl.312