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A Survey to Assess Self-Image In Individuals with Bladder Exstrophy: A Call for Psychosocial Support

Monday, October 22, 2012: 1:00 PM
Grand Ballroom B (Hilton Riverside)
Melanie C. Pennison, MPH1, Lauren Mednick, PhD2, Rosemary H. Grant, RN1, Diane Price, MSW3, Ilina Rosoklija, MPH1, Lin Huang, PhD4, Sonja Ziniel, PhD4 and Joseph G. Borer, M.D.1, (1)Department of Urology, Children's Hospital Boston, Boston, MA, (2)Department of Psychiatry, Children's Hospital Boston, Boston, MA, (3)Department of Social Work, Children's Hospital Boston, Boston, MA, (4)Clinical Research Program, Children's Hospital Boston, Boston, MA

Purpose:    Although research conducted with patients with urological conditions has indicated that functional limitations, pain, limited mobility, and social restrictions can impact one’s self-image (Cash and Pruzincky, 2002), the influence of visibility of the condition has not been examined.  We hypothesized that the presence of abdominal and genital scarring may lead to poorer body image and difficulties with self esteem. This study aims to assess the differences in self-image of patients with bladder exstrophy (BE) as compared to patients with kidney stones (KS).

Methods: As part of a larger study examining self-image and quality of life in patients diagnosed with BE, a 25 question multiple choice Urological Body Image Questionnaire (UBIQ; for ages 13-25) consisting of questions regarding physical appearance, avoiding behaviors, disclosure of urological condition, romantic relationships and future expectations was created. A modified UBIQ (mUBIQ) for ages 8-12 was created by removing questions regarding relationships and future expectations. Chi-squared, Fisher’s exact or Cochran-Armitage Trend Tests was performed and findings of <.01 were considered significant.

Results:   A total of 48 patients {24 bladder exstrophy (17 male, 7 female), 24 kidney stones (8 male, 16 female)} between the ages of 8-25 were included in the study.  The mUBIQ was completed by 16 patients (10 with BE, 6 with KS) and the UBIQ was completed by 32 patients (14 with BE, 18 with KS).  As an aggregate, compared to patients with KS (n=24), patients with BE (n=24) were significantly more likely to avoid changing clothes in front of peers (p=.0001), not tell friends about one’s condition (p=.0001) and report feeling discomfort in discussing one’s condition with friends (p=.0006).  Differences were not found for avoiding activities with friends (p= 1.0), avoiding sleeping over at friends houses (p=.09) or avoiding wearing bathing suits (p=.35).  Patients with BE were significantly more likely than patients with KS to think their condition would prevent them from having future romantic relationships (p=.002) and children (p=.003).

Conclusions: As proposed, our findings suggest that patients with BE do reveal some behaviors that may indicate a poorer self-image. They are more likely to avoid changing clothes in front of peers, less likely to disclose their condition and are more uncomfortable discussing their condition with friends. Findings may call for an individual approach to assessing and evaluating issues related to self-esteem and identity. In addition, results may highlight the importance of receiving alternative psychosocial support that can be provided through support groups. Participation in such groups allows patients to meet other individuals with similar medical challenges and offers them a venue for open discussions regarding their condition, thereby increasing opportunities for interpersonal and group engagement while decreasing feelings of social isolation for those suffering with a poorer self image.