title: Lessons from a patient experience survey in a randomized surgical trial of treatment of stress urinary incontinence in women.
abstract: OBJECTIVE
  To understand the patient burden of study procedures/measures at completion of a randomized controlled trial (RCT) requiring extensive testing and follow-up visits.
  
  
  METHODS
  A survey sent after completing the 2-year visit of an RCT comparing Burch colposuspension and fascial retropubic sling to treat stress urinary incontinence assessed degree of bother for seven study procedures, eight study-related factors, and possible motivations to participate in the study.
  
  
  RESULTS
  A total of 450 study participants (88%) returned the survey. Urodynamic testing was the most bothersome procedure, followed by 24-h pad test and Q-tip test. Self-administered questionnaires were the least bothersome. Main reasons to participate in the study were to help others, obtain better knowledge about the condition, and be guided by a committed team of investigators/study coordinators.
  
  
  CONCLUSIONS
  At the end of a large multicenter RCT, we learned from a confidential patient survey that the most burdensome activities involved invasive procedures, frequent visits, and multiple forms to fill out.
authors.affiliation: UT Southwestern Medical Center, 5323 Harry Hines Blvd., Dallas, TX 75390-9110, USA. philippe.zimmern@utsouthwestern.edu
authors.forename: Philippe E
authors.initials: PE
authors.lastname: Zimmern
authors.forename: Kimberly J
authors.initials: KJ
authors.lastname: Dandreo
authors.forename: Larry
authors.initials: L
authors.lastname: Sirls
authors.forename: Alice
authors.initials: A
authors.lastname: Howell
authors.forename: Lynn
authors.initials: L
authors.lastname: Hall
authors.forename: Judy
authors.initials: J
authors.lastname: Gruss
authors.forename: Kathy
authors.initials: K
authors.lastname: Jesse
authors.forename: Tamara
authors.initials: T
authors.lastname: Dickinson
authors.forename: Caren
authors.initials: C
authors.lastname: Prather
mesh_terms: D003625:Data Collection; D005260:Female; D005500:Follow-Up Studies; D013509:Gynecologic Surgical Procedures / Q000379:methods*; D006801:Humans; D017060:Patient Satisfaction; D012189:Retrospective Studies; D057566:Self Report; D053825:Suburethral Slings; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014550:Urinary Incontinence, Stress / Q000601:surgery*