Agreement between self-reported and central cancer registry-recorded prevalence of cancer in the Alaska EARTH study

Abstract

Reliance on self-reported health status information as a measure of population health can be challenging due to errors associated with participant recall. We sought to determine agreement between self-reported and registry-recorded site-specific cancer diagnoses in a cohort of Alaska Native people. We linked cancer history information from the Alaska Education and Research Towards Health (EARTH) cohort and the Alaska Native Tumor Registry (ANTR), and calculated validity measures (sensitivity, specificity, positive predictive value, negative predictive value, kappa). Multiple logistic regression models were used to assess independent associations of demographic variables with incorrect reporting. We found that among Alaska EARTH participants, 140 self-reported a history of cancer, and 99 matched the ANTR. Sensitivity ranged from 79% (colorectal cancer) to 100% (prostate cancer); specificity was over 98% for all-sites examined. Kappa was higher among prostate and female breast cancers (κ=0.86) than colorectal cancers (κ=0.63). Women (odds ratio [OR] (95% confidence interval [CI]): 2.8 (1.49–5.31)) and participants who were older than 50 years (OR (95% CI): 2.8 (1.53–4.12)) were more likely to report incorrectly. These data showed good agreement between self-reported and registry-recorded cancer history. This may be attributed to the high quality of care within the Alaska Tribal Health System, which strongly values patient-provider relationships and the provision of culturally appropriate care.

Recall accuracy of notifications about incidental findings from an MRI examination: results from a population-based study

“…Other population-based studies investigating comparable outcomes such as the accuracy of self-reported cancer diagnoses reported sensitivities with a median of 60%. 5 24–26 The sensitivities varied strongly between and within most cancer sites, ranging from about 13% to 100%. Consistently high sensitivities were observed for breast cancer (81–93%).…”

“…Different results are reported, for example, from a study conducted in a cohort of Alaska Native People which demonstrated that women and individuals older than 50 years were more likely to have reported their history of cancer incorrectly, and educational level was not associated with recall accuracy. 24 Results from the Spanish European prospective investigation into cancer and nutrition study showed that higher educational level was associated with correct self-report of cancer history. 25 In that study, the participants’ age and sex had no influence on recall accuracy.…”

“…The heterogeneity of these results might be explained by differences in the investigated outcomes and study populations in the single studies. For example, the personal relevance of recall of self-reported cancer diagnoses 24 25 and of self-reported participation in screening examination 29 is different, and might also be associated with different characteristics of the respondents. Further, studies were based on data from large populations, 25 29 or included individuals from particular ethnic groups.…”

“…Further, studies were based on data from large populations, 25 29 or included individuals from particular ethnic groups. 24…”

Assessing How Health Information Needs of Individuals With Colorectal Cancer Are Met Across the Care Continuum: an International Cross-Sectional Survey

“…However, prior studies comparing self-reported cancer diagnosis with information from cancer registries have shown good sensitivity and speci city. [27,28] The distribution of the survey online allowed us to collect an international sample of individuals with CRC. However, an online survey may have led to non-coverage bias due to convenience sampling.…”