title: Assessing quality of life of patients with hypospadias: A systematic review of validated patient-reported outcome instruments.
abstract: BACKGROUND
  Patient-reported outcomes have the potential to provide invaluable information for evaluation of hypospadias patients, aid in decision-making, performance assessment, and improvement in quality of care. To appropriately measure patient-relevant outcomes, well-developed and validated patient-reported outcome (PRO) instruments are essential.
  
  
  OBJECTIVE
  To identify and evaluate existing PRO instruments designed to measure quality of life and/or satisfaction of individuals with hypospadias that have been developed and validated in a hypospadias population.
  
  
  METHODS
  A systematic search of MEDLINE, EMBASE, PsycINFO, CINAHL and Health and Psychosocial Instruments was conducted in April 2016. Two reviewers independently assessed studies and identified PRO instruments for inclusion. Data were extracted on study characteristics, instrument development and validation, and content domains.
  
  
  RESULTS
  A total of 32 studies were included that used or described five PRO instruments: Hypospadias Objective Scoring Evaluation (HOSE), Pediatric Penile Perception Score (PPPS), Penile Perception Score (PPS), Genital Perception Scale (GPS) for adults, and GPS for children/adolescents. Instrument development and validation was limited. The majority of identified instruments focused on postoperative cosmetic satisfaction, with only one instrument considering urinary function, and no instruments evaluating sexual function and psychosocial sequelae.
  
  
  CONCLUSIONS
  While many hypospadias studies have acknowledged the necessity of a patient-reported element, few have used validated PRO instruments developed in a hypospadias population. Existing instruments to measure patient-reported outcomes in hypospadias require improvement in both the breadth of content and in their development and validation methodology.
authors.affiliation: Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada.
authors.forename: K J
authors.initials: KJ
authors.lastname: Sullivan
authors.affiliation: Faculty of Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada.
authors.forename: Z
authors.initials: Z
authors.lastname: Hunter
authors.affiliation: Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada.
authors.forename: V
authors.initials: V
authors.lastname: Andrioli
authors.affiliation: Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada; Faculty of Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada.
authors.forename: L
authors.initials: L
authors.lastname: Guerra
authors.affiliation: Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada; Faculty of Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Leonard
authors.affiliation: Department of Pediatrics, McMaster University, 3N27, 1280 Main Street West, Hamilton, ON, Canada; Department of Clinical Epidemiology & Biostatistics, McMaster University, 3N27, 1280 Main Street West, Hamilton, ON, Canada.
authors.forename: A
authors.initials: A
authors.lastname: Klassen
authors.affiliation: Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada; Faculty of Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada. Electronic address: mkeays@cheo.on.ca.
authors.forename: M A
authors.initials: MA
authors.lastname: Keays
mesh_terms: D003657:Decision Making; D006801:Humans; D007021:Hypospadias / Q000523:psychology*; D008297:Male; D063868:Patient Outcome Assessment; D000071066:Patient Reported Outcome Measures; D017060:Patient Satisfaction; D011594:Psychometrics; D011788:Quality of Life
keywords: Hypospadias; Patient-reported outcome (PRO); Quality of life; Satisfaction