Impact of ulcerative colitis from patients' and physicians' perspectives: Results from the UC: NORMAL survey.
BACKGROUND
Two national internet surveys were conducted to understand how patients perceive the impact of ulcerative colitis (UC) relative to gastroenterologists.


METHODS
In total, 451 patients with UC (20% mild, 63% moderate, 13% severe, 4% unsure [patient self-assessment]) were recruited for one survey and 300 gastroenterologists (not associated with the patients) were recruited for the other survey.


RESULTS
Patients reported, on average, 8 (self-defined) flares per year; this was more than the number anticipated by gastroenterologists. Sixty-two percent of patients with UC reported that their disease made it difficult to lead a normal life, compared with gastroenterologists' estimations of 36%. Only 42% of patients believed that being in remission could mean living without symptoms. Both patients and gastroenterologists reported that it is difficult for patients to take medication as prescribed every day (42% and 90%) and that managing UC medication is a struggle for patients (49% and 41%). Forty-six percent of patients admitted nonadherence to their therapy over the previous week, while gastroenterologists believed that 41% of their patients were not adherent.


CONCLUSIONS
These surveys identified disparities between patients' and gastroenterologists' perceptions of the impact of UC on patients' lives. The results suggest that more patients than gastroenterologists estimated chose to adapt their lives to accommodate UC rather than act to optimize therapy and adherence. Improved communication between patients and gastroenterologists, as well as better management strategies and education are necessary.
Rubin
David T
DT
Section of Gastroenterology, Department of Medicine, University of Chicago Medical Center, Chicago, Illinois, USA. drubin@uchicago.edu
Siegel
Corey A
CA
Kane
Sunanda V
SV
Binion
David G
DG
Panaccione
Remo
R
Dubinsky
Marla C
MC
Loftus
Edward V
EV
Hopper
Joseph
J
D000293:Adolescent; D000328:Adult; D003093:Colitis, Ulcerative / Q000188:drug therapy / Q000503:physiopathology* / Q000523:psychology*; D017281:Cost of Illness; D003625:Data Collection; D005260:Female; D005762:Gastroenterology; D005765:Gastrointestinal Agents / Q000627:therapeutic use; D006801:Humans; D008297:Male; D055118:Medication Adherence; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D010817:Physician-Patient Relations; D010820:Physicians / Q000523:psychology*; D055815:Young Adult
D005765:Gastrointestinal Agents