A survey of Ulcerative Colitis (UC) patients and gastroenterologists (GIs) in ten countries, published in the scientific journal Inflammatory Bowel Diseases in 2019, explored whether patients and physicians agree upon the importance of reasons for pursuing disease management and provided insight into what some UC patients hope to achieve from treatment.
2100 endoscopy-confirmed UC patients and 1254 GIs in Australia, Canada, Finland, France, Germany, Italy, Japan, Spain, the UK, and the USA were surveyed between August 2017 and February 2018. The average age of surveyed patients was 40.8 years. 53% of patients were male, 82% had moderate to severe UC, and 67% experienced few to no symptoms of the disease.
Among patients, most (65%) felt that they were not in control of their disease but that UC controlled their life. 67% of patients indicated that more of their time was spent in the bathroom than in any other single activity. Over one third of patients (35%) believed that their GI did not sufficiently understand how their quality of life (QOL) was affected by UC.
Among reasons for pursuing disease management, the ability to conduct daily activities was found to be regarded as important by the greatest percentage of patients (59%) and physicians (77%). The lowest percentage of patients were concerned with the ability to travel (44%) and to minimize/avoid side effects of medication use (44%) while reducing fatigue was regarded as important by the lowest percentage of physicians (44%).
Overall, both patients and physicians regarded the ability to control pain (53% and 61%, respectively), to avoid colectomy (52% and 70%, respectively), and to avoid hospitalization (52% and 70%, respectively) as important for disease management.
The importance to patients and physicians of other factors such as reducing the risk of cancer (57% and 50%, respectively), avoiding accidental bowel movements and associated preparation (55% and 54%, respectively), and the ability to eat desired foods without symptoms (45% and 45%, respectively) were also assessed.
While most surveyed patients indicated that they set goals with their GI for disease management (71%), a lower percentage of GIs were found to have incorporated discussion of goals into their management approach (58%). Both patients and physicians (62% and 72%, respectively) hoped to discuss disease management goals in greater detail.
This study provided fascinating and valuable insights into the factors motivating patients and GIs to pursue the management of UC. Clarifying patient desires and increasing discussion of treatment goals could contribute to improving patient satisfaction and disease outcomes.
Some readers will also find interest in this survey from 2010, published in the journal Digestive Diseases and Sciences, which evaluated whether ulcerative colitis patients are impacted differently than individuals with other chronic diseases such as rheumatoid arthritis, asthma, or migraine headaches.
Dubinsky M, Panaccione R, Lopez-Sanroman A, et al. (2019) P024 PATIENT AND HEALTHCARE PROVIDER VIEWS ON ULCERATIVE COLITIS TREATMENT GOALS AND QUALITY OF LIFE: RESULTS OF A GLOBAL ULCERATIVE COLITIS NARRATIVE SURVEY. Inflammatory Bowel Diseases, 25, Issue Supplement 1:S12.
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