Gender-associated differences in the psychosocial and developmental outcome in patients affected with the bladder exstrophy-epispadias complex.
OBJECTIVE
To identify problems in the long-term psychosocial and developmental outcome specific to patients with the bladder exstrophy-epispadias complex (BEEC), using a self-developed semi-structured questionnaire, as there are various techniques of reconstruction to repair BEEC but to date neither patients nor surgeons have a clear answer about which type gives the most acceptable long-term results.


METHODS
Increasingly many patients with BEEC reach adulthood and wish to have sexual relationships and families. To date, no studies have used disease-specific psychological instruments to measure the psychosocial status of patients with BEEC. Thus we contacted 208 patients with BEEC, and 122 were enrolled, covering the complete spectrum of the BEEC. The data assessed included the surgical reconstruction, subjective assessment of continence, developmental milestones, school performance and career, overall satisfaction in life, disease-specific fears and partnership experiences in patients aged >18 years. We compared affected females and males to assess gender-associated differences in quality of life.


RESULTS
Affected females had more close friendships, fewer disadvantages in relation to healthy female peers and more partnerships than the males. Family planning seemed to be less of a problem in affected females. There were no gender differences in the adjustments within school and professional career, which was very good in general.


CONCLUSIONS
Future studies are needed to assess the disease-specific anxieties, considering gender-specific differences.
Lee
Celine
C
Zentrum für Kinderheilkunde, Universitätsklinikim Bonn, Bonn, Germany.
Reutter
Heiko M
HM
Grässer
Melanie F
MF
Fisch
Margit
M
Noeker
Meinolf
M
D000293:Adolescent; D000328:Adult; D001746:Bladder Exstrophy / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D004842:Epispadias / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007398:Interpersonal Relations; D008297:Male; D010549:Personal Satisfaction; D011606:Psychosexual Development; D011788:Quality of Life; D012727:Sex Characteristics; D011795:Surveys and Questionnaires