Do Patients with Inflammatory Bowel Disease Really Know What Other Immune-mediated Inflammatory Diseases They Are Diagnosed with?

Abstract

Abstract Background and Aims The association of inflammatory bowel disease [IBD] with other immune-mediated inflammatory diseases [IMIDs] in the same patient is well known. We aimed to evaluate the degree of knowledge that patients with IBD have regarding the coexistence of other IMIDs, and to analyse the factors associated with concordance between self-reported and confirmed medical information. Methods Patients with IBD at a tertiary hospital answered a questionnaire on the presence of 54 IMIDs [self-reported diagnosis], and their IMID diagnosis was confirmed in their medical records [reference diagnosis]. Agreement between the self-reported IMID and IMID according to medical records was evaluated. The association between concordance and different predictors was evaluated using logistic regression models. Results A total of 1,620 patients were included; 626 [39%] patients were diagnosed with at least one IMID, and 177 [11%] with two or more. Overall agreement between patients´ self-report and medical records was k:0.61. When we grouped IMIDs according to affected organs or systems, agreement on rheumatic IMIDs was moderate [k:0.58], whereas agreement on cutaneous [k:0.66], endocrine [k: 0.74,] and ocular [k:0.73] IMIDs was substantial. Among patients who had IMIDs, the factor associated with greater concordance was female gender; less concordance was associated with a lower educational level and the fact that the IMID had been diagnosed at the same time or later than IBD. Conclusion The knowledge that patients with IBD have regarding the coexistence of other IMIDs is poor, particularly in rheumatic IMIDs.