Validity and reliability of self-reported diabetes in the atherosclerosis risk in communities study

The objective of this study was to assess the validity of prevalent and incident self-reported diabetes compared with multiple reference definitions and to assess the reliability (repeatability) of a self-reported diagnosis of diabetes. Data from 10,321 participants in the Atherosclerosis Risk in Communities (ARIC) Study who attended visit 4 (1996-1998) were analyzed. Prevalent self-reported diabetes was compared with reference definitions defined by fasting glucose and medication use obtained at visit 4. Incident self-reported diabetes was assessed during annual follow-up telephone calls and was compared with reference definitions defined by fasting glucose, hemoglobin A1c, and medication use obtained during an in-person visit attended by a subsample of participants (n 1,738) in 2004-2005. The sensitivity of prevalent self-reported diabetes ranged from 58.5 to 70.8, and specificity ranged from 95.6 to 96.8, depending on the reference definition. Similarly, the sensitivity of incident self-reported diabetes ranged from 55.9 to 80.4, and specificity ranged from 84.5 to 90.6. Percent positive agreement of self-reported diabetes during 9 years of repeat assessments ranged from 92.7 to 95.4. Both prevalent self-reported diabetes and incident self-reported diabetes were 84-97 specific and 55-80 sensitive as compared with reference definitions using glucose and medication criteria. Self-reported diabetes was >92 reliable over time.