Endometriosis Illness Perceptions

A problematic delay to diagnosis of endometriosis is nearly 6-10 years, causing many individuals to suffer without an answer, remain without access to appropriate treatment, and receive misdiagnoses. A lack of knowledge among practitioners as well as the general public is often cited as a major contributor to this delay. Research has yet to examine the knowledge and lay perceptions of a sample of individuals who may currently be on this journey to diagnosis (i.e., those undiagnosed with symptoms consistent with endometriosis). The present work will apply the Common Sense Model (Leventhal, 1980; Leventhal et al., 2016), a theoretical framework that attempts to understand illness perceptions and their influences on important disease-related outcomes like coping and seeking care, to the context of endometriosis. In an online study of adults with endometriosis symptoms that are undiagnosed, their lay perceptions of endometriosis and important outcomes like coping, wellbeing, symptom characteristics like severity and acceptance, and behavioral outcomes like learning more information and intentions to talk to a doctor will be measured. This study will examine whether there may be benefits of holding certain illness perceptions relating to endometriosis on important aspects of endometriosis-related outcomes. Findings from this work will inform our understanding of the Common Sense Model as applied to a context of nonpatients with medically unexplained symptoms as well as point to future avenues for shortening the delay to diagnosis by targeting psychological features of the patients at hand.