UCSF

OBJECTIVE: To contextualize the challenges that persons with congenital genitourinary conditions (CGC) may encounter in adulthood, we examined health care access, readiness for self-management, and health care utilization of adults with spina bifida (SB). METHODS: Through surveys distributed via social media, persons with SB were asked about access and barriers to care, readiness for self-management, and health care utilization (ie, medical visits, missed visits, emergency room [ER] visits, hospital admissions) within the past year. Multivariable models were fitted to examine determinants of utilization. RESULTS: Of the 270 eligible respondents (mean age 39), 24.5% had not received care from a urologist in the past year. The odds of missing any medical visits were increased among those with more prior urologic surgeries (odds ratio (OR) 1.35, 95%confidence interval (CI) 1.05-1.78) and those with ER visits for urologic condition within the past year (OR 2.65, 95%CI 1.22-6.01). Those with private insurance had lower odds of having ER visits for urologic condition (OR 0.46, 95%CI 0.22-0.84). The odds of hospital admission related to urologic condition were increased among female (OR 2.35, 95%CI 1.01-6.64), those with more prior urologic surgeries (OR 1.18, 95%CI 1.09-1.51), and those with a urologist (OR 2.98, 95%CI 1.15-14.47). CONCLUSION: A substantial proportion of adults with CGC lack routine urologic care. Considering the significant barriers to care and lapses in care, efforts to improve access and optimize health care services utilization for this population with high medical complexity are warranted.