Health-Related Quality of Life in Patients with the Bladder Exstrophy-Epispadias Complex and Relationship to Incontinence and Sexual Factors: A Review of the Recent Literature

Authors:
Holmdahl, G., Dellenmark-Blom, M., Nordenskjöld, A., and Sjöström, S.
Abstract:
The bladder exstrophy-epispadia complex (BEEC) includes malformations with midline closing defects of the lower abdomen and external genitalia. Long-term consequences with urinary incontinence and sexual dysfunction, in spite of multiple surgical interventions, are common and expected to affect the patient's health-related quality of life (HRQOL). The extent and the predictive factors are, however, not known. New patient-reported outcome research is emerging, but valid and reliable condition-specific HRQOL are still missing. The aim of this review is to summarize and discuss the latest published reports (2015-2019) on HRQOL in patients with the BEEC and its relationship to incontinence and sexual factors.
DOI:
10.1055/s-0040-1713178
URL:
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0040-1713178
Journal:
Eur J Pediatr Surg
issn:
0939-7248
Publication year:
2020
pages:
251-260
General health perceptions / HRQoL:
Health-related quality of life
Age:
Adults (18-65)
Children (0-18)
Seniors (65+)
Disease:
Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the genitourinary system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis)   
ICIQ - International Consultation on Incontinence Questionnaire (versions: ICIQ-SF; ICIQ-FLUTS; ICIQ-male LUTS; ICIQ-Bowel; ICIQ-VS; ISIQ-UI-SF; ICIQ-LTCqol - ICIQ-Long-Term Catheter QoL; ICIQ-Bladder Diary)   
IPSS - International Prostate Symptom Score    | 
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 SF15; PedsQL 4.0 TODDLER; PedsQL 4.0 YOUNG CHILD; PedsQL 4.0 CHILD; PedsQL 4.0 TEENAGER; PedsQL 4.0 SF15 Toddler/Young Child/Child/Teen)   
SF-12 - 12-item Short Form Health Survey [alias: RAND-12] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS)   
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36)    |  | also see: database.cosmin.nl

Tools