Advocating for transition of care in urology

Imagine, if you will, that you have just received a referral from an emergency physician colleague regarding a 19-year-old woman with spina bifida who just moved to your region. She has been to the emergency department several times recently for presumed urinary tract infections and has had some recent difficulty catheterizing her stoma. No other information is yet available. She has not yet been able to find a primary care physician, though she and her family are working hard on this and they have some upcoming interviews. If you are an adult urologist reading this issue of the CUAJ, and perhaps specifically if you practice in a somewhat smaller group without the benefit of close interactions with a physiatrist, you might admit to some feelings of anxiety/trepidation considering this imaginary referral. Maybe your first thought was that you would most assuredly try and redirect it somewhere “more appropriate.” If so, you are not at all alone, as multiple previous reports have pointed out that adult care providers are generally ill-prepared to care for young adults with complex medical conditions.^1,2

Despite some of our recent experiences with kids going off to university for the first time, all adolescents will eventually transition to adulthood. This transition for those children with complex medical conditions further involves the move to a foreign, adult-focused healthcare system. The above-described young adult with spina bifida and complex genitourinary issues is likely the most obvious illustration of the need for closer consideration of this transition of care in urology, although others include conditions as simple as voiding dysfunction to those more complex, such as transplantation. Significant advances in management have enhanced the lifespan and quality of life of children with complex urological conditions, leading to this increasing awareness and focus on the need for improved transfer (or more aptly described as transition) of care for these youth to the adult healthcare world.

In 2002, a consensus statement from several key American societies was published underscoring the importance of reinforcing this transition and providing guidance for reformation of care processes to meet these goals. Suggestions included considerations regarding payment of healthcare professionals, medical information interchange, as well as professional development prerequisites.³ Unfortunately, it would seem apparent that despite this initial enthusiasm, there has not been as much progress as one would expect. A quick perusal on the internet would suggest there are pockets of interesting programs and initiatives housed at individual pediatric hospitals, particularly around diabetes care. However, gaps in transition of care support have been widely decried. This appears to be true in urology and specifically in those youth with spina bifida, according to the “call-to-arms” found in this issue of the CUAJ by Dr. Koyle and fellow authors.⁴ Koyle at al provide an in-depth and ambitious outline aimed at addressing transition of care of spina bifida patients in Ontario. Although the article speaks specifically to a single province, based on the related commentaries, this a ubiquitous issue in urology and hopefully, this article will lead to a more exhaustive, national conversation. It seems to have been a long-time coming.