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Health Related Quality of Life in Patients with Bladder Exstrophy: A Call for Targeted Interventions

2014; Lippincott Williams & Wilkins; Volume: 191; Issue: 5S Linguagem: Inglês

10.1016/j.juro.2013.09.089

1527-3792

Melanie Pennison, Lauren Mednick, Ilina Rosoklija, Rosemary Grant, Diane Price, Lin Huang, Sonja I. Ziniel, Joseph G. Borer,

Urinary Bladder and Prostate Research

No AccessJournal of UrologyDisorders of Sexual Differentiation/Exstrophy1 May 2014Health Related Quality of Life in Patients with Bladder Exstrophy: A Call for Targeted Interventions Melanie C. Pennison, Lauren Mednick, Ilina Rosoklija, Rosemary Grant, Diane Price, Lin Huang, Sonja Ziniel, and Joseph G. Borer Melanie C. PennisonMelanie C. Pennison More articles by this author , Lauren MednickLauren Mednick More articles by this author , Ilina RosoklijaIlina Rosoklija More articles by this author , Rosemary GrantRosemary Grant More articles by this author , Diane PriceDiane Price More articles by this author , Lin HuangLin Huang More articles by this author , Sonja ZinielSonja Ziniel More articles by this author , and Joseph G. BorerJoseph G. Borer More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2013.09.089AboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract Purpose: Research on health related quality of life in patients with bladder exstrophy has demonstrated mixed results compared to population samples. Few studies have had a comparison group with a urological disorder and none correlated body image to health related quality of life. We compared health related quality of life in patients with bladder exstrophy to that in patients with kidney stones and correlated body image to health related quality of life in the bladder exstrophy population. Materials and Methods: Participants included 24 patients with kidney stones and 24 with bladder exstrophy. Patient age was 8 to 25 years. Participants completed the PedsQL (Pediatric Quality of Life Inventory) and the 25-item multiple choice UBIQ (Urological Body Image Questionnaire), which was created for the current study. Results: Compared to patients with kidney stones those with bladder exstrophy indicated significantly higher scores on physical functioning (p = 0.0005) and overall health related quality of life (p = 0.02) in the 8 to 17-year-old cohort. When health related quality of life was compared to body image in patients with bladder exstrophy, lower social scores were associated with those who worried about friends finding out about the condition (p = 0.01) and about having romantic relationships (p = 0.003). Lower social (p = 0.006) and emotional (p = 0.009) functioning scores were associated with patients who thought that they were less likely to have romantic relationships. Conclusions: The finding that patients with bladder exstrophy had a better physical functioning score than those with kidney stones is not surprising, given the morbidity of active stone disease. The negative correlations with body image in the bladder exstrophy population may be due to the possibility of others discovering the condition and the perceived likelihood of not having romantic relationships. References 1 : Early outcome following complete primary repair of bladder exstrophy in the newborn. J Urol2005; 174: 1674. Link, Google Scholar 2 : Health-related quality of life of children and adolescents with chronic illness—a two year prospective study. Qual Life Res2004; 13: 1309. Google Scholar 3 : Health-related quality of life in children and adolescents with Duchenne muscular dystrophy. Pediatrics2012; 130: 1559. Google Scholar 4 : Quality of life in adults with bladder exstrophy-epispadias complex. J Urol2010; 184: 2389. 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Google Scholar © 2014 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetailsCited byTaskinen S, Suominen J and Mattila A (2018) Gender Identity and Sex Role of Patients Operated on for Bladder Exstrophy-EpispadiasJournal of Urology, VOL. 196, NO. 2, (531-535), Online publication date: 1-Aug-2016.Suominen J, Santtila P and Taskinen S (2018) Sexual Function in Patients Operated on for Bladder Exstrophy and EpispadiasJournal of Urology, VOL. 194, NO. 1, (195-199), Online publication date: 1-Jul-2015. Volume 191Issue 5SMay 2014Page: 1553-1557Supplementary Materials Advertisement Copyright & Permissions© 2014 by American Urological Association Education and Research, Inc.Keywordsquality of lifequestionnairesnephrolithiasisbody imagebladder exstrophyMetricsAuthor Information Melanie C. Pennison More articles by this author Lauren Mednick More articles by this author Ilina Rosoklija More articles by this author Rosemary Grant More articles by this author Diane Price More articles by this author Lin Huang More articles by this author Sonja Ziniel More articles by this author Joseph G. Borer More articles by this author Expand All Advertisement PDF downloadLoading ...