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

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Published:25th Mar 2020
Purpose: Although research conducted on patients with urological conditions has indicated that functional limitations, pain, limited mobility, and social restrictions can impact self-image, the influence of visibility of the condition has not been examined. The current study aims to assess body image and self-image in school age through young adult patients with bladder exstrophy (BE) as compared to patients with Kidney Stones (KS). Materials and Methods: Patients diagnosed with BE and KS completed a 25 item multiple-choice Urological Body Image Questionnaire (UBIQ; for ages 13-25) which was created for the current study and consists of questions regarding physical appearance, avoidance behaviors, disclosure of urological condition, romantic relationships and future expectations. A modified UBIQ (mUBIQ) for patients� ages 8-12 was created by removing questions regarding relationships and future expectations. Results: 48 patients (24 with BE, 24 with KS) aged 8-25 completed the questionnaire. Compared to patients with KS, patients with BE were significantly more likely to avoid changing clothes in front of peers (p=.0001) and not tell friends about one�s condition (p=.0001). Patients with BE were also significantly more likely to think their condition would prevent them from having future romantic relationships (p=.002) and children (p=.003). Conclusions: Differences in visibility and privacy of the two conditions likely explains the discrepancy found between the groups. Findings may call for an individual approach to assessing issues related to self-esteem and identity in patients with BE and may highlight the importance of receiving psychosocial support.

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