Patient reported symptoms during an ulcerative colitis flare: a Qualitative Focus Group Study.
BACKGROUND
It has been assumed that the symptoms measured in disease activity indices for ulcerative colitis reflect those symptoms that patients find useful in evaluating the severity of a disease flare.


OBJECTIVE
We aimed to identify which symptoms are important to patients and to compare these symptoms with a comprehensive list of commonly measured symptoms to evaluate whether the patient-reported important symptoms are represented in current disease activity indices for ulcerative colitis.


METHODS
Qualitative focus group study.


RESULTS
Patients in this sample confirmed 15 symptoms but not 11 other symptoms found in common ulcerative colitis activity indices. Patients identified an additional 14 symptoms not included in commonly used ulcerative colitis activity indices, which they believed to be important in evaluating the onset or severity of an ulcerative colitis flare.


CONCLUSIONS
Current indices capture only a portion of the clinical symptoms that are important to patients in an ulcerative colitis flare, and may neither accurately measure nor fully reflect patients' experience of ulcerative colitis. These findings present an opportunity to develop better patient-centered measures of ulcerative colitis.
Waljee
Akbar K
AK
Division of Gastroenterology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI 48109, USA. awaljee@med.umich.edu
Joyce
Joel C
JC
Wren
Patricia A
PA
Khan
Tahira M
TM
Higgins
Peter D R
PD
D000208:Acute Disease; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000209:etiology; D001294:Attitude to Health; D003093:Colitis, Ulcerative / Q000150:complications* / Q000175:diagnosis / Q000523:psychology; D003113:Colonoscopy; D003672:Defecation; D005242:Fecal Incontinence / Q000209:etiology; D005243:Feces; D005260:Female; D017144:Focus Groups; D006471:Gastrointestinal Hemorrhage / Q000209:etiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009120:Muscle Cramp / Q000209:etiology; D018802:Patient-Centered Care / Q000379:methods; D011594:Psychometrics; D011788:Quality of Life; D012720:Severity of Illness Index; D055815:Young Adult