Gender‐associated differences in the psychosocial and developmental outcome in patients affected with the bladder exstrophy‐epispadias complex

Abstract

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. PATIENTS AND 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. CONCLUSION Future studies are needed to assess the disease‐specific anxieties, considering gender‐specific differences.

The Psychosocial Impact of Bladder Exstrophy in Adolescence

“…Key concerns include: dealing with incontinence [3,4], anxiety and depression [5], self-esteem [6] and impulse control [7]; body image disturbances regarding genital appearance, and anxieties about the acceptability and functionality of the penis [3,8,9]; and sexual disturbance, mostly related to later sexual debut and increased anxiety related to sexuality [10]. Fewer studies have looked at the impact on females [11][12][13][14]. Woodhouse [14] reached the conclusion that school and employment adjustment is comparable between male and female patients.…”

Psychosocial screening at paediatric BEEC clinics: A pilot evaluation study

“…Externalising behaviours tend to be more commonly reported for boys in general, and may indicate a lack of alternative coping mechanisms for managing stress (e.g. talking openly with trusted others) that females with BEEC establish more readily [7]. In our sample, school functioning difficulties were significantly more likely to be reported in relation to bladder exstrophy as opposed to epispadias, potentially because of more numerous school absences for hospital appointments.…”

“…Whilst mean scores on the measures used suggest a relatively optimistic picture, certain individual scores did fall within the clinical ranges, highlighting the potential need for Introduction Bladder Exstrophy and Epispadias Complex (BEEC) is associated with an increased risk of impaired mental health, quality of life, and psychosocial functioning [1]. This risk is heightened at particular ages [2] and in association with specific variables, such as primary diagnosis [3], medical outcomes [2,4e6] and gender [7]. Therefore, systematic screening for a broad range of psychosocial risk factors and difficulties is arguably an important initial step for BEEC Services.…”

“…Therefore, systematic screening for a broad range of psychosocial risk factors and difficulties is arguably an important initial step for BEEC Services. Researchers recommend the use of psychosocial tools, including semi-structured interviews and conditionspecific questionnaires to help identify patients who potentially require psychological assessment [1,7]. There is, however, a lack of BEEC-specific measures to explore quality of life issues and the impact of the condition [8].…”

The exstrophy-epispadias complex

“…However, previous reports found a higher prevalence of psychiatric illness in this patient population [2]. A study of the psychosocial outcome via gender differences of patients with bladder exstrophy found females to be more socially adjusted than males [3]. With respect to education and careers, they found no gender differences; overall, the patients had done well in this aspect of social development.…”