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Psychological features, quality of life and sexual functioning in a group of adolescents and young adults living with a bladder exstrophy epispadias complex

Di Grazia, M1

1: IRCCS Burlo Garofolo, Italy

Bladder exstrophy epispadias complex (BEEC) is a rare congenital malformation affecting both male and female with an incidence of 1/35,000 livebirths. The malformation involves the bladder, the urethra, the external genitalia and the pelvis. The newborn presents a lower abdominal defect, through which an open bladder template herniates. The malformation requires a staged surgical treatment but even after successful repair patients can experience psychosexual difficulties throughout their lives. This project investigates the presence or absence of a depressive disorder with misery, emptiness, irritability, accompanied by somatic and cognitive changes which can significantly impact on the overall performance of the individual. The degree of alexithymia, a difficulty in verbalizing emotions, as well as the overall quality of life of people suffering from this condition is examined by means of several tests and specific interviews, implemented in the course of the study.

Aim: To evaluate the presence of alexithymia, depressive traits, difficulties in sexual assertiveness and/or in sex-lives and overall quality of life in people with BEEC compared to a group of unaffected peers.

Materials and methods: This case-control observational study included a group of BEEC cases compared to a group of control subjects unaffected by any urogenital malformation. Inclusion criteria for BEEC group were: a proved diagnosis of BEEC; age> 16 years; sex M and F; approval of informed consent and privacy forms. Inclusion criteria for control cases were: absence of any urogenital malformation; age> 16; sex M and F; approval of informed consent and privacy forms. The following questionnaires were administered to fifty cases and fifty controls: the Beck Depression Interventory (BDI-II), the Toronto Alexithymia Scale (TAS-20), the Quality of Life, (SF-36), The Sexual Awareness Questionnaire (SAQ) and the Sexual History Form (SHF). The draft of a structured interview was administered to five cases. Data were analyzed by open source Rstudio and Kruskal-Wallis test.

Results: There were no differences between cases and controls as far as the presence of alexithymia and depressive traits are concerned. The QoL cases scored lower in physical activities and general health compared to controls; sex life experiences of the case group significantly differ from controls in terms of sexual monitoring (SAQ subscale). Women in the BEEC group had significantly lower scores in the Sexual History Form compared to controls.

Conclusion: Our findings demonstrate that the emotional burden suffered by the female affected population exceed that of the male population, therefore female would need an implementation of interventions to improve their sexual experiences. Further research on psycolosexual aspects and gender differences are needed to validate these data.


Work supported by industry: no.

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