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

Holmdahl, Gundela; Dellenmark‐Blom, Michaela; Nordenskjöld, Agneta; Sjöström, Sofia

doi:10.1055/s-0040-1713178

Cited by 5 publications

(1 citation statement)

References 52 publications

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“…10 11 In newly published reviews it is reported that the overall health-related quality of life may be impaired in patients with BEEC, and incontinence and sexual dysfunction seem to have a negative impact. 12 13…”

Section: Introductionmentioning

confidence: 99%

Genetic Counseling for Bladder Exstrophy-Epispadias Complex

Reutter

Holmdahl

2021

Eur J Pediatr Surg

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Bladder exstrophy-epispadias complex (BEEC) represents the severe end of the uro-rectal malformation spectrum and has profound impact on continence, sexual, and renal function. Treatment of BEEC is primarily surgical, and the main goals are safe closure of the abdominal wall, urinary continence while preserving renal function, and adequate cosmetic and functional genital reconstruction. Psychosocial and psychosexual outcomes and adequate health-related quality of life depend on long-term multidisciplinary care. The overall outcome is now considered very positive and affected individuals usually lead self-determined and independent lives with the desire to start their own families later in life. Certainty about the risk of recurrence and the provision of information about the current state of knowledge about the identified genetic causes with high penetrance will have an impact on family planning for healthy parents with an affected child and for affected individuals themselves. This review addresses this information and presents the current state of knowledge.

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