title: [Subjective developmental outcome in bladder exstrophy and epispadias. A pilot study].
abstract: The bladder exstrophy-epispadias complex (BEEC) belongs to one of the most devastating urological malformations affecting the complete urinary tract including the genitalia. A semi-standardized questionnaire was used to evaluate the functional and psychosocial developmental outcome in 122 affected patients recruited from German-speaking self-referral support groups. The questionnaire covered mode of reconstruction, subjective assessment of continence, milestones of child development, education, school performance, level of life satisfaction, anxieties, and in patients older than 16 years partnership experience. The results showed a mean of one surgery in the age group 0-4, of four surgeries in both age groups 5-13 and 14-20, and seven surgeries in patients aged 20 and over. The continence rates for the latter three age groups were 36, 64, and 80%, respectively. We found that the neurocognitive development was unremarkable. Most patients showed above average performance in school and in their profession. On the other hand, they exhibited psychological anxieties and worries in their experience with sexuality and partnerships. Future studies will be necessary to clarify the association of urological status, functional impairments, and psychosocial adaptation as a basis for improved approaches to comprehensive care and support.
authors.affiliation: Zentrum für Kinderheilkunde, Universitätsklinikum Bonn. reutter@uni-bonn.de
authors.forename: H
authors.initials: H
authors.lastname: Reutter
authors.forename: C
authors.initials: C
authors.lastname: Lee
authors.forename: M F
authors.initials: MF
authors.lastname: Grässer
authors.forename: M
authors.initials: M
authors.lastname: Noeker
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000175:diagnosis / Q000523:psychology; D015982:Bias; D001746:Bladder Exstrophy / Q000523:psychology / Q000534:rehabilitation*; D002648:Child; D002675:Child, Preschool; D002988:Cloaca / Q000002:abnormalities; D002658:Developmental Disabilities / Q000523:psychology / Q000534:rehabilitation*; D004522:Educational Status; D004842:Epispadias / Q000523:psychology / Q000534:rehabilitation*; D005060:Europe; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007206:Individuality; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D017063:Outcome Assessment, Health Care / Q000706:statistics & numerical data; D010865:Pilot Projects; D012657:Self-Help Groups; D012741:Sexual Maturation; D012803:Sick Role; D012917:Social Adjustment; D014549:Urinary Incontinence