The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

Amy Wajchendler, Peter Anderson, Martin A. Koyle

Abstract


Introduction: Due to medical advances over the past three decades, the vast majority of children with spina bifida (SB) now survive into adulthood. As a result, there is a need to implement a well-defined urological transition process for these patients from the pediatric to adult environment. The objective of this study was to identify and analyze the current medical practices employed and the attitudes regarding transition by Canadian pediatric urologists caring for the SB population.

Methods: A survey consisting of 14 questions pertaining to physician demographics, current practice, and attitudes towards the transition process of SB patients was distributed at the 2015 annual Pediatric Urologists of Canada (PUC) conference. The survey respondents remained anonymous, and the data were collected and analyzed.

Results: A total of 28 surveys were collected from urologists across Canada (25 full-time pediatric, three also providing adult care), representing a >75% response rate. The transition process was
suggested to begin at the age of 18 or older by 43% (12/28) of pediatric urologists. The majority, 86% (24/28), do not currently use a questionnaire or a checklist to determine transition readiness of patients. Forty-six percent (13/28) of pediatric urologists do not provide ongoing urological care to their patients after referral has been made to adult-centred care. In the province of Ontario, in which 39% (11/28) of the pediatric urologists practice, 82% (9/11) are full-time pediatric urologists and 78% (7/9) do not provide ongoing care to SB patients after the age of 18.

Conclusions: A significant minority of Canadian pediatric urologists perceive that the transition process should begin at the age of 18 or older. As such, it can be inferred that transfer of care and transition
are synonymous, not independent. Simplistically, this suggests that transition represents an event rather than a longitudinal process. The fact there is no defined ongoing urological care as a component of this process, suggests the potential for substandard quality of care after these patients graduate to the adult sector. Different provincial healthcare systems and funding plans may further hinder this transition of care by denying provider continuity based on reimbursement plans.


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DOI: http://dx.doi.org/10.5489/cuaj.4338