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Patient Understanding of "Flare" and "Remission" of Inflammatory Bowel Disease
Itishree Trivedi1, Erin Darguzas, Salva N Balbale
1Itishree Trivedi, MD, MS, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago; and Center for Healthcare Studies, Northwestern University, Chicago, Illinois. Erin Darguzas, APN, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois. Salva N. Balbale, MS, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois; and Center for Healthcare Studies, Northwestern University, Chicago, Illinois. Alyse Bedell, MS, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois. Shilpa Reddy, Northwestern University, Chicago, Illinois. Joel R. Rosh, MD, Division of Pediatric Gastroenterology, Goryeb Children's Hospital/Atlantic Health, Morristown, New Jersey. Laurie Keefer, PhD, Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Center for Healthcare Studies, Northwestern University, Chicago, Illinois; and Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, New York.
Abstract:
Patients with inflammatory bowel disease have adopted medical jargon terms of "flare" and "remission," but what they mean by these terms is ill-defined and may have implications for nurse-patient communication and treatment expectancy. The aim of this study was to elicit patients' understanding of "flare" and "remission." Individuals with self-reported inflammatory bowel disease were recruited through social media. A web-based survey, with closed and open-ended questions, was administered. Conventional content analysis was used to evaluate respondents' perceptions of jargon terms. A word cloud was generated to augment analysis by visualization of word use frequency. A majority of the 34 respondents had a symptom-focused understanding and described these terms as alternating states. Various symptoms were understood to signify "flare," which was largely attributed to lifestyle factors. Corroborated by the word cloud, there was rare mention of inflammation or tissue damage. This study demonstrates that an understanding of "flare" and "remission" by patients with inflammatory bowel disease is largely symptom-based. The role of inflammation, medication failure, and targets of inflammatory bowel disease treatment beyond symptom control are not currently well known to patients with inflammatory bowel disease. To create a shared understanding of symptoms and treatment goals between the patient and the nurse, patient education on emerging expectations of inflammatory bowel disease care should be prioritized.