Adults with myelomeningocele: An interview study about life situation and bladder and bowel management

Aim: To assess life situation, and bladder and bowel management in individuals with myelomeningocele (MMC) after transferal to adult medical care. Materials and methods: All individuals (134) with myelomeningocele from western Sweden, born before 1981, and assessed on at least two occasions by a pediatric urologist, were invited to participate in a telephone interview according to a structured protocol. Sixty-nine individuals (32 males, 37 females) with a median age of 34 years (range 27-50) agreed to participate. Results: Sixty-two individuals (90%) passed high school or had university education and 46 (67%) were employed. Fifty-three (77%) had their own apartment and 27 (39%) lived with a partner. Clean intermittent catheterization was used by 49 (71%), more commonly in females (p < 0.05). Pads were used by 60 (87%) individuals. Ten (14%) had urotherapy support. Of those operated on, 16 (53%) had a consultation with a urologist every 3 years; the corresponding number for the non-operated was 12 (31%). Eight individuals were treated with anticholinergic drugs. None had support for improvement of the fecal emptying regimen. Conclusions: Of the participants in the study, one third had no or rare contact with a urologist, few had urotherapy support and none had support for bowel regimen. (C) 2012 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.