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Spina bifida (SB) is a neurological disorder caused by defective closure of the neural tube during the first four weeks of gestation resulting in varying degrees of paralysis and impairment of bladder or bowel function. The incidence of SB is decreasing due to preventative measures, including routine preconception folic acid supplementation and antenatal detection with the option of termination, yet the Canadian Community Health Survey data 2010–2011showed a prevalence of approximately 1500 individuals in Ontario.1 Less than a half-century ago, many of these children were unlikely to survive the nursery and now the majority of SB patients will survive into adulthood, most having undergone multiple neurological, orthopedic, and urological surgeries.2,3 Given the spectrum of medical, surgical, developmental, and social problems associated with SB, there is a need for long-term, comprehensive care strategies. The greatest long-term risks to SB patients are urologic complications. The majority require intermittent catheterization, exposing them to risks of infection and bladder stone formation. Patients who have undergone bladder augmentation have an 8% risk of rupture, an often lethal complication, and a markedly increased risk of bladder cancer.2 Other ongoing risks include: latex allergy, electrolyte abnormalities, B-12 deficiency, and renal deterioration. Up to 94% of SB patients have at least one chronic medical condition, emphasizing the need for continuing medical care past childhood. Finally, SB patients experience marked social and developmental impairments.4 In Ontario, pediatric care of SB patients is in the four tertiary pediatric hospitals. Interprofessional teams of physicians, social workers, physical and occupational therapists, psychologists, and nurses care for patients until they reach 18 years of age, when they are discharged to independently manage their care. Some may be referred to an adult urologist; however, the majority do not seek care until a complication arises. Furthermore, two-thirds of SB patients do not seek routine followup as young adults, despite an obvious need for ongoing comprehensive care to mitigate significant risks to their health.5 In major U.S. centres, the concept of establishing regional “transitional” SB clinics for this adolescent and young adult (AYA) population has been suggested.5 Major barriers exist to establishing such programs for SB in Ontario, including funding models for physicians and hospitals. There is a disconnect of physician funding in the province, with pediatric specialists reimbursed on fixed alternative funding plans (AFP) and adult practitioners on a fee-for-service (FFS) basis. Without a hybridized reimbursement system, there is not crossover of care by physicians from the pediatric to adult system, and vice versa. In addition, there is a lack of desire on the patients’ and pediatric providers’ sides to separate long-term care to a new model in the adult arena. This is exacerbated by a lack of expertise and interest to care for these patients by adult providers.5 According to Ouyang et al, there are currently insufficient health services for age-appropriate care to meet the realistic demands for chronic care of patients with SB.2 Novel, patient-centred approaches are necessary to address their complex needs, specifically urological and social, within the constraints of the current healthcare system.

A proposed solution to a urological tightrope walk: The challenge of transition of spina bifida patients from pediatric to adult care in Ontario