title: Health related quality of life in patients with bladder exstrophy: a call for targeted interventions.
abstract: OBJECTIVE
  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.
  
  
  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.
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Melanie C
authors.initials: MC
authors.lastname: Pennison
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Lauren
authors.initials: L
authors.lastname: Mednick
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Ilina
authors.initials: I
authors.lastname: Rosoklija
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Rosemary
authors.initials: R
authors.lastname: Grant
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Diane
authors.initials: D
authors.lastname: Price
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Lin
authors.initials: L
authors.lastname: Huang
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Sonja
authors.initials: S
authors.lastname: Ziniel
authors.affiliation: Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts. Electronic address: joseph.borer@childrens.harvard.edu.
authors.forename: Joseph G
authors.initials: JG
authors.lastname: Borer
mesh_terms: D000293:Adolescent; D000328:Adult; D001746:Bladder Exstrophy / Q000523:psychology; D001828:Body Image; D002648:Child; D005260:Female; D033062:Friends; D006801:Humans; D007398:Interpersonal Relations; D007669:Kidney Calculi; D008297:Male; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: bladder exstrophy; body image; nephrolithiasis; quality of life; questionnaires