ESPU Congress 2018 - Abstract Book

237 11–14 APRIL, 2018, HELSINKI, FINLAND 10:40–10:45 S5-6 (PP) LIVING WITH A MITROFANOFF: A GROUP APPROACH Hannah COLLINS  1 , Ruth HURRELL  1 , Beverley WHITNALL  2 , Yvie MORLEY  2 , Raimondo CERVELLIONE  2 and David KEENE  2 1) Manchester University NHS Foundation Trust, Royal Manchester Children's Hospital, Paediatric Psychosocial Service, Manchester, UNITED KINGDOM - 2) Manchester University NHS Foundation Trust, Royal Manchester Children's Hospital, Paediatric Urology, Manchester, UNITED KINGDOM PURPOSE To deliver a group offering children with bladder exstrophy and their families the chance to gather information and share experiences about mitrofanoff surgery and living with a mitrofanoff. MATERIAL AND METHODS 10 children (six boys and four girls), aged six to 16 years of age, attended with their parents. Seven had already undergone mitrofanoff surgery and three were considering it. Two group sessions were delivered three months apart to the same participants. The multi-disciplinary team ran tailored parent and child sessions in parallel. The format included provision of medical and psychosocial information as well as time for participant discussion. The Paediatric Incontinence Questionnaire (PinQ) was used to help identify those who might benefit from additional support around quality of life (QoL). A qualitative feedback questionnaire was used to evaluate the group. RESULTS 100 % (n=10) of parents and 90 % (n=9) of children stated that they would recommend the group to others and rated it as ‘very helpful'. During the group sessions parents developed an information sheet for families, and children made a film about their thoughts on living with a mitrofanoff to help other service users. PinQ scores remained largely consistent for children pre and post (two children were identified as requiring additional psychosocial support). Parents were more likely than their children to report improved PinQ scores following the group. CONCLUSIONS Whilst parents and children both valued the group initiative, parents were most likely to perceive a measurable change in child QoL following the group. We reflect on this with reference to our descriptive data.