Long-term outcome studies of patients to include what happens at transition to adulthood are rare but increasing in the literature as paediatric urologists are questioning their long-term results more deeply. These authors aimed to assess life situation and bladder and bowel management in individuals with myelomeningocoele (MMC) after their transfer to adult care in Sweden. They used a telephone interview. Of 134 individuals, 69 (32 male, 37 female; median age 34 years – range 27-50) agreed to participate. Assessing life situation, 74% had completed high school and 16% had a university degree. Sixty-seven percent were employed but as high as 26% had no daily activity at all. Nine percent were living with their parents and 77% had their own apartment. Fifty-four percent had a driving licence and 39% described themselves as living independently. Males were more likely to be single (75%) then females (49%) with lower sexual experiences (M=25%, F=51%). Two males and seven females had offspring. Urinary function was much better than bowel function. Ninety-four percent had independence for urinary function (20% spontaneous voiding, 71% clean intermittent catheterisation and 9% other methods). Urinary leakage occurred in 71% and only 12% were on anticholinergic medication. Assessing faecal elimination: 51% managed this spontaneously, 13% used enemas, 27% used manual evacuation and 9% had a stoma. Independence was achieved in 75%. In terms of generalised follow-up, less than 33% had a uro-therapist and none had support for their faecal elimination. This study highlights the potential ‘black hole’ of no follow-up or support that these patients can fall into once they reach adulthood.
Adults with myelomeningocoele: life situation and bladder and bowel management
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