Supporting patients with bladder exstrophy and their family: presentation of two tools

Abstract

Purpose The Department of Paediatric Urology of Lyon University Hospitals follows a large cohort of patients with bladder exstrophy / epispadias. In order to help these families to understand the various steps of this treatment and their potential complications, we designed a brochure which tries to answer the main queries often raised by the families and patients: What is bladder exstrophy? How frequent is it? What are the causes? How is the diagnosis performed? What are the various steps of the surgical treatment and their potential problems? What is the outcome in terms of self-confidence, continence, sexuality etc. Material and methods This brochure is an excellent support to run the outpatient clinic by Clinical Specialist Nurses (CNS). It is also an essential tool for the Association we created to support French speaking exstrophy patients (APEX: Accompagnement du Patient EXstrophique). We would like to present this brochure to the ESPU Nurse group to get their comments and possibly to generate an ESPUN brochure for these families. Results We have previously produced similar brochures for Neuropathic Bladder and Hypospadias with a very positive feed-back from patients, families and GPs. Conclusions If we get adequate support, we will create a website which could be a joint venture with ESPU / ESPUN