title: A survey to assess body and self-image in individuals with bladder exstrophy: a call for psychosocial support.
abstract: OBJECTIVE
  Although research in patients with urological conditions indicates that functional limitations, pain, limited mobility and social restrictions can impact self-image, to our knowledge the influence of the visibility of the condition has not been examined. We assessed body image and self-image at school age through young adulthood in patients with bladder exstrophy compared to patients with kidney stones.
  
  
  METHODS
  Patients diagnosed with bladder exstrophy and kidney stones completed a 25-item multiple choice Urological Body Image Questionnaire for ages 13 to 25 years, which was created for the current study. It consists of questions on physical appearance, avoidance behaviors, urological condition disclosure, romantic relationships and future expectations. A modified Urological Body Image Questionnaire for patients 8 to 12 years old was created by removing questions on relationships and future expectations.
  
  
  RESULTS
  A total of 24 patients with bladder exstrophy and 24 with kidney stones 8 to 25 years old completed the questionnaire. Compared to patients with kidney stones, patients with bladder exstrophy were significantly more likely to avoid changing clothes in front of peers and to not tell friends about the condition (each p = 0.0001). Patients with bladder exstrophy were also significantly more likely to think that the condition would prevent having future romantic relationships (p = 0.002) and children (p = 0.003).
  
  
  CONCLUSIONS
  Differences in the visibility and privacy of the 2 conditions likely explain the discrepancy between the groups. Findings may call for an individual approach to assessing issues related to self-esteem and identity in patients with bladder exstrophy and may highlight the importance of receiving psychosocial support.
authors: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors: Melanie C
authors: MC
authors: Pennison
authors: Lauren
authors: L
authors: Mednick
authors: Rosemary
authors: R
authors: Grant
authors: Diane
authors: D
authors: Price
authors: Ilina
authors: I
authors: Rosoklija
authors: Lin
authors: L
authors: Huang
authors: Sonja
authors: S
authors: Ziniel
authors: Joseph G
authors: JG
authors: Borer
mesh_terms: D000293:Adolescent; D000328:Adult; D001746:Bladder Exstrophy / Q000150:complications / Q000523:psychology*; D001828:Body Image / Q000523:psychology*; D002648:Child; D005500:Follow-Up Studies; D006801:Humans; D007669:Kidney Calculi / Q000150:complications / Q000523:psychology; D008297:Male; D011594:Psychometrics / Q000379:methods*; D011788:Quality of Life; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: BE; KS; UBIQ; Urological Body Image Questionnaire; bladder exstrophy; kidney calculi; kidney stones; questionnaires; social support; urinary bladder