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.
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.
Authors: Heiko Reutter; Markus Draaken; Tracie Pennimpede; Lars Wittler; Felix F Brockschmidt; Anne-Karolin Ebert; Enrika Bartels; Wolfgang Rösch; Thomas M Boemers; Karin Hirsch; Eberhard Schmiedeke; Christian Meesters; Tim Becker; Raimund Stein; Boris Utsch; Elisabeth Mangold; Agneta Nordenskjöld; Gillian Barker; Christina Clementsson Kockum; Nadine Zwink; Gundula Holmdahl; Göran Läckgren; Ekkehart Jenetzky; Wouter F J Feitz; Carlo Marcelis; Charlotte H W Wijers; Iris A L M Van Rooij; John P Gearhart; Bernhard G Herrmann; Michael Ludwig; Simeon A Boyadjiev; Markus M Nöthen; Manuel Mattheisen Journal: Hum Mol Genet Date: 2014-05-22 Impact factor: 6.150
Authors: Anthony J Schaeffer; Gayane Yenokyan; Kaitlyn Alcorn; Susan L Furth; Marie Diener-West; Albert W Wu; John P Gearhart; Jennifer L Dodson Journal: J Urol Date: 2012-09-19 Impact factor: 7.450
Authors: Heiko Reutter; Kim Keppler-Noreuil; Catherine E Keegan; Holger Thiele; Gen Yamada; Michael Ludwig Journal: Curr Genomics Date: 2016-02 Impact factor: 2.236