Functional outcomes in patients with spina bifida in New South Wales, Australia

OBJECTIVE: To characterize the clinical and functional profile of adult patients with spina bifida attending a statewide spina bifida service in New South Wales, Australia. SETTING: public spina bifida service in NSW, Australia. PARTICIPANTS: all adult patients (≥18 years) attending the spina bifida service as of January 2025. OUTCOME MEASURES: continence status, mobility, skin integrity, psychosocial functioning, and ventriculoperitoneal shunt status. METHODS: A retrospective audit was conducted of clinical records for all adult patients (≥18 years) attending the NSW statewide spina bifida service as of January 2025. Variables assessed included continence status, mobility, skin integrity, psychosocial functioning, and ventriculoperitoneal shunt status. RESULTS: 143 patients were included (median age 37 years, 62% female). Urinary incontinence affected 42% of patients in the preceding 12 months, with 56% managing their bladder via intermittent catheterization. Bowel incontinence was reported by 20% of patients. Half of all patients (51%) were wheelchair users. A quarter (25%) reported a history of pressure injuries in the preceding 12 months. Despite these challenges, most patients (75%) lived either independently or with family support. Of patients with available data, 72% were engaged in work or study. CONCLUSIONS: Adults with spina bifida continue to experience high rates of bladder and bowel dysfunction, mobility impairment, and pressure injuries. However, with appropriate multidisciplinary support, most individuals achieve employment and functional independence. These findings highlight the ongoing need for comprehensive spina bifida services and provide baseline data about this population in a large quaternary hospital.