Patients living >= 25 years with a non-continent urinary diversion: What can we learn?

How is quality of life (QoL) experienced in patients living with a non-continent urinary diversion (NCUD) for more than 25 years. The NCUD still is important in patients who suffer from congenital anomaly, urinary malignancy, end-stage functional voiding or storage disorders. Various complications can occur having a NCUD and can influence psychological and social well-being. In literature the importance of ostomy self-care is described. Limited information is available about living >= 25 years with a NCUD. A mixed-method (quantitative and qualitative) was used. Twenty-one patients, who were using NCUD appliances were selected, from a cohort of 43. Data was collected using a validated questionnaire supplemented with some questions. Additionally, semi-structured narrative-based interviews were conducted. Informed consent was obtained. Questionnaire response was 71% (n = 15). One was invalid. Ratio female/male was equal. Mean age 62 (range 42-83) years. Mean time living with a NCUD 40 (range 25-56) years. Although results per question vary, a mean score of 63 for QoL was experienced. Eleven patients had a good QoL (mean 66). There were no differences between gender and for the age-groups. Five patients were interviewed. Characteristics were comparable with the quantitative group. The results of the mixed method study strengthened each other and are consistent with the (limited) results described in literature. The QoL is generally experienced as good. The QoL is not so much influenced by the NCUD itself, but by the underlying disease and/or complications of the NCUD. During the first years information and guidance is important to secure good QoL. The guidance patients receive nowadays is generally experienced as very good in our group, however it remains important to discuss sexuality, involve partners, caregivers and the help of peers. Multi-center studies and prospective follow-up regarding QoL might give more insight in the QoL over the years.