K J Sullivan1, Z Hunter2, V Andrioli1, L Guerra3, M Leonard3, A Klassen4, M A Keays5. 1. Department of Pediatric Surgery, Division of Urology, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, ON, Canada. 2. Faculty of Medicine, University of Ottawa, 451 Smyth Rd, Ottawa, ON, Canada. 3. 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. 4. 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. 5. 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.
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.
BACKGROUND:Patient-reported outcomes have the potential to provide invaluable information for evaluation of hypospadiaspatients, 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: K H Chan; J Panoch; A Carroll; S Downs; M P Cain; R Frankel; B Cockrum; C Moore; S Wiehe Journal: J Pediatr Urol Date: 2019-04-27 Impact factor: 1.830
Authors: Christopher J Long; Jason Van Batavia; Amy B Wisniewski; Christopher E Aston; Laurence Baskin; Earl Y Cheng; Yegappan Lakshmanan; Theresa Meyer; Bradley Kropp; Blake Palmer; Natalie J Nokoff; Alethea Paradis; Brian VanderBrink; Kristy J Scott Reyes; Elizabeth Yerkes; Dix P Poppas; Larry L Mullins; Thomas F Kolon Journal: J Pediatr Urol Date: 2021-02-19 Impact factor: 1.921