Resource utilization and productivity loss in persons with spina bifida—an observational study of patients in a tertiary urology clinic in Germany.

Background and purpose To investigate resource use and burden associated with spina bifida (SB) in Germany. Methods A questionnaire was used to obtain information on SB-related healthcare resource use and assistive technologies used for the last 1 and 10 years. Individuals with SB were recruited at a tertiary specialist clinic. To participate, persons with SB required the cognitive ability to respond or a caregiver to answer questions on their behalf. They could use personal medical charts or other records to answer. The analyses included assessment of frequency and extent of resource use for both time frames. Results Data on 88 persons with a diagnosis of SB were collected (44% female). Du…