title: Assessing the Experience of Vaginal Dilator Use and Potential Barriers to Ongoing Use among a Focus Group of Women with Mayer-Rokitansky-Küster-Hauser Syndrome.
abstract: OBJECTIVE
  To assess the experience of dilator use for neovagina creation in women diagnosed with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome and identify barriers affecting patient compliance with dilator use.
  
  
  METHODS
  This was a qualitative study using a structured questionnaire to investigate perception and identify barriers regarding vaginal dilator use. A questionnaire was administered after participants viewed a 2-minute patient educational video to additionally examine the usefulness of a patient education video tool as an adjunct to counseling in clinic on vaginal dilator use.
  
  
  METHODS
  We enrolled 13 adolescent girls and women diagnosed with MRKH, aged 14-48 years, recruited from clinic and during a conference geared toward women affected by MRKH.
  
  
  RESULTS
  The mean age of participants was 26 (±11.4) years with most diagnosed between the ages of 12 and 18 years. Of all participants, 69% (9/13) reported ever being sexually active with a mean age of coitarche of 16 (±2.6) years. Seventy-seven percent (10/13) reported current or past use of vaginal dilators, and most had some previous education on dilator use. Only 15% (2/13) reported no previous exposure to an educational tool. After viewing the 2-minute educational video, all participants rated it very helpful using a Likert scale (strongly agree to strongly disagree). Major themes that emerged as perceived barriers to dilator use included viewing dilation as a negative experience, uncertainty about success, and lack of motivation.
  
  
  CONCLUSIONS
  Education is an integral part of improving compliance with vaginal dilator use among adolescent girls and women affected by MRKH. Technology can be used to reinforce face-to-face counseling in the clinic. To our knowledge, this is the first study to specifically investigate patient experience with dilator use and opinion regarding the use of video technology to demonstrate self-directed neovagina creation in an MRKH population. The barriers identified in this study provide new insights to inform future research and clinical management of dilator use.
authors.affiliation: Department of Pediatrics, and the Division of Pediatric and Adolescent Gynecology, Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas. Electronic address: adeyemi@bcm.edu.
authors.forename: Oluyemisi A
authors.initials: OA
authors.lastname: Adeyemi-Fowode
authors.affiliation: Department of Pediatrics, and the Division of Pediatric and Adolescent Gynecology, Department of Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas.
authors.forename: Jennifer E
authors.initials: JE
authors.lastname: Dietrich
mesh_terms: D058489:46, XX Disorders of Sex Development / Q000150:complications / Q000628:therapy*; D000293:Adolescent; D000328:Adult; D000013:Congenital Abnormalities / Q000628:therapy*; D004106:Dilatation / Q000295:instrumentation*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged; D009095:Mullerian Ducts / Q000002:abnormalities*; D010353:Patient Education as Topic / Q000379:methods*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D014621:Vagina / Q000002:abnormalities*; D055815:Young Adult
keywords: Barriers; Education; MRKH; Vaginal agenesis; Vaginal dilators