Exploring the “Gap” Between Patient and Physician Perspectives in Inflammatory Bowel Disease

Author: Reme Mountifield

Mountifield, Reme, 2017 Exploring the “Gap” Between Patient and Physician Perspectives in Inflammatory Bowel Disease, Flinders University, School of Medicine

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While physicians diagnose and manage “disease”, patients experience “illness”. It is intuitive that a “gap” exists between the patient and physician perspectives in relation to chronic diseases such as Inflammatory Bowel Disease (IBD). Indirect evidence for such a “gap” exists in the high frequency of health behaviours which deviate from physician recommendation, such as medication non-adherence and non-participation in colonoscopic cancer surveillance. This thesis reports on six studies published in the peer-reviewed literature investigating whether a “gap” exists between patient and physician knowledge and beliefs in areas of IBD that require patient health decisions. The first two studies demonstrated a large and clinically significant gap, highlighting important misperceptions regarding the risk of infertility and the use of IBD medication during pregnancy. This novel work is likely to explain both the phenomenon of voluntary childlessness previously reported in IBD, as well as medication non-adherence during pregnancy. A further study demonstrated the dramatically positive effect of patient education on reproductive knowledge in IBD, suggesting that the gap can be modified with intervention. This work has influenced international guidelines (European Crohn’s and Colitis Organisation and Toronto) regarding the management of IBD during pregnancy, particularly in relation to preconception counselling. In addition, it has prompted the development of both Australian national guidelines for physicians managing IBD in pregnancy and a patient information booklet regarding reproduction and IBD with state-wide endorsement across South Australia. The fourth study investigated views regarding Colorectal Cancer in IBD, and also demonstrated a substantial “gap”. Individuals with IBD vastly overestimated both their cancer risk, and the ability of colonoscopic screening to mitigate this risk. This may have implications for participation in colonoscopic surveillance programs in individuals with IBD. Studies 5 and 6 addressed attitudes towards conventional medication and Complementary and Alternative Medicine (CAM) in IBD. Two distinct types of medication non-adherence were identified; that of medication dose omission, which is well described, and “covert dose reduction”, a lesser known phenomenon whereby patients deliberately dose reduce their IBD medication without their physician’s knowledge. This distinction was important as contrasting patient beliefs were found to underlie the two types of non-adherence. Study 6 provided further evidence for the “gap” in documenting high rates of Complementary and Alternative Medicine use (CAM) amongst individuals with IBD. This study provided an insight into the “hidden” influences on the “gap”, such as the opinions of family and friends, as well as highlighting the importance of clear patient-physician communication. Overall this body of work confirms the existence of a “gap” between patient and physician knowledge and beliefs across diverse areas in IBD. Patient misperceptions are frequent, although they vary in clinical significance. This thesis informs clinical practice in raising awareness of this “gap” and highlights the need for patient education as a highly effective strategy to empower patients and to optimise the patient-physician relationship.

Keywords: Inflammatory Bowel Disease, medication non adherence, fertility, pregnancy,
Subject: Medicine thesis

Thesis type: Doctor of Philosophy
Completed: 2017
School: School of Medicine
Supervisor: Peter Bampton