title: International survey of patients with IBS: symptom features and their severity, health status, treatments, and risk taking to achieve clinical benefit.
abstract: BACKGROUND
  Although clinicians generally make treatment decisions in irritable bowel syndrome (IBS) related to the type of symptoms, other factors such as the perceived severity and the risks patients are willing to tolerate for effective treatment are also important to consider. These factors are not fully understood.
  
  
  OBJECTIVE
  To describe among patients with IBS their symptoms and severity, quality of life and health status, medications taken, and the risk that they would take to continue medications for optimal relief.
  
  
  METHODS
  Adult patients diagnosed with IBS who accessed the websites of the International Foundation for Functional GI Disorders or the University of North Carolina Center for Functional GI Disorders filled out questionnaires to address the study aims.
  
  
  RESULTS
  The 1966 respondents (83% female, 91% white, 78% US/Canada) reported impaired health status: restricting on average 73 days of activity in a year, having poor health-related quality of life particularly with dietary restrictions, mood disturbance, and interference with daily activity, and 35% reported their symptoms as severe defined primarily as pain, bowel difficulties, bloating, and eating/dietary restrictions). These symptoms were reported in some combination by over 90%, and 35.1% endorsed all 4 items. To receive a treatment that would make them symptom free, patients would give up 25% of their remaining life (average 15 y) and 14% would risk a 1/1000 chance of death. Most of the medications being taken were for pain relief and 18% were taking narcotics. Complementary and alternative treatments were used by 37%.
  
  
  CONCLUSIONS
  Patients accessing IBS informational websites report moderate-to-severe impairments in health status, and would take considerable risk to obtain symptom benefit. There is an unmet need to find effective treatments for patients with IBS and regulatory agencies might consider raising risk-benefit ratios when approving new medications for IBS.
authors.affiliation: UNC Center for Functional GI and Motility Disorders, Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7080, USA. drossman@med.unc.edu
authors.forename: Douglas A
authors.initials: DA
authors.lastname: Drossman
authors.forename: Carolyn Blank
authors.initials: CB
authors.lastname: Morris
authors.forename: Susan
authors.initials: S
authors.lastname: Schneck
authors.forename: Yuming J B
authors.initials: YJ
authors.lastname: Hu
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Norton
authors.forename: William F
authors.initials: WF
authors.lastname: Norton
authors.forename: Stephan R
authors.initials: SR
authors.lastname: Weinland
authors.forename: Christine
authors.initials: C
authors.lastname: Dalton
authors.forename: Jane
authors.initials: J
authors.lastname: Leserman
authors.forename: Shrikant I
authors.initials: SI
authors.lastname: Bangdiwala
mesh_terms: D000328:Adult; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D038622:Internationality; D020407:Internet; D043183:Irritable Bowel Syndrome / Q000503:physiopathology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011584:Psychology; D011788:Quality of Life; D012309:Risk-Taking; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires