COSMIN database

Assessing quality of life of patients with hypospadias: A systematic review of validated patient-reported outcome instruments

Authors:
Sullivan, K. J., Hunter, Z., Andrioli, V., Guerra, L., Leonard, M., Klassen, A., and Keays, M. A.
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.
DOI:
10.1016/j.jpurol.2016.11.010
URL:
https://ac.els-cdn.com/S1477513116303874/1-s2.0-S1477513116303874-main.pdf?_tid=5c7fdaf6-8b2e-4afe-9e87-948d39043947&acdnat=1529578683_bafe38ab47a9c7df27816f9d1590d0b5
Journal:
J Pediatr Urol
issn:
1477-5131
Publication year:
2017
pages:
19-27
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Children (0-18)
Seniors (65+)
Disease:
Diseases of and symptoms related to the genitourinary system
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales