title: A Novel Decision Aid for Surgical Patients with Ulcerative Colitis: Results of a Pilot Study.
abstract: BACKGROUND
  Up to 30% of patients who have ulcerative colitis are faced with the complex decision between end ileostomy and IPAA. We developed a decision aid to encourage shared decision making between patients and surgeons.
  
  
  OBJECTIVE
  The aim of this study is to determine whether a decision aid is effective and acceptable for surgical patients with ulcerative colitis and their treating surgeons.
  
  
  METHODS
  This was a prospective cohort study.
  
  
  METHODS
  Patients and surgeons were enrolled from 3 colorectal surgery clinics.
  
  
  METHODS
  Consecutive adult patients with ulcerative colitis who were candidates for IPAA and end ileostomy were selected.
  
  
  METHODS
  Patients used a multilingual decision aid before meeting with the surgeon.
  
  
  METHODS
  We measured changes in knowledge, treatment preference, and stage of decision making, as well as preparation for decision making, patient satisfaction, and surgeon satisfaction after using the decision aid.
  
  
  RESULTS
  Twenty-five patients were enrolled; 5 had previously undergone subtotal colectomy. After using the decision aid, patients' knowledge scores improved by 39% (p < 0.006), 6 patients changed their treatment preference, and 8 reported increased certainty in treatment preference. The median for preparation for decision making was 75 of 100. Patient satisfaction with the decision aid (median score, 37/41) and surgeon satisfaction with the clinical encounter (median score, 38/45) were high. Patients who previously underwent subtotal colectomy had lower preparation for decision-making scores (median score, 58 vs 78 for surgery-naïve patients, p = 0.06), and did not report increased certainty in treatment preference after using the decision aid.
  
  
  CONCLUSIONS
  The study included a small sample with no comparison group.
  
  
  CONCLUSIONS
  A novel decision aid for surgical patients with ulcerative colitis appears to be effective and acceptable in patients and surgeons from diverse clinical settings. Patients who have not yet initiated surgical treatment seem to benefit most. Future studies to validate the knowledge questionnaire and test the decision aid in a randomized fashion are warranted.
authors.affiliation: 1 Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California 2 Department of Surgery, University of California, San Francisco, California 3 The Dartmouth Institute for Health Policy & Clinical Practice, Lebanon, New Hampshire 4 Division of Gastroenterology, Department of Medicine, University of California, San Francisco, California 5 Section of Colorectal Surgery, Department of Surgery, University of California, San Francisco, California 6 Division of Geriatrics, Department of Medicine, University of California, San Francisco, California.
authors.forename: Jessica N
authors.initials: JN
authors.lastname: Cohan
authors.forename: Elissa M
authors.initials: EM
authors.lastname: Ozanne
authors.forename: Justin L
authors.initials: JL
authors.lastname: Sewell
authors.forename: Rebecca K
authors.initials: RK
authors.lastname: Hofer
authors.forename: Uma
authors.initials: U
authors.lastname: Mahadevan
authors.forename: Madhulika G
authors.initials: MG
authors.lastname: Varma
authors.forename: Emily
authors.initials: E
authors.lastname: Finlayson
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D002648:Child; D000066491:Clinical Decision-Making / Q000379:methods*; D003093:Colitis, Ulcerative / Q000601:surgery*; D003661:Decision Support Techniques; D005260:Female; D006801:Humans; D007081:Ileostomy; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D017060:Patient Satisfaction; D010865:Pilot Projects; D016737:Proctocolectomy, Restorative; D011446:Prospective Studies; D055815:Young Adult