ADOLESCENT UROLOGY – A SPECIALTY IN DEVELOPMENT
Dan Wood, Consultant in Adolescent and Reconstructive Urology, University College London Hospitals, 235 Euston Road, London NW1, UK. e-mail: email@example.com
There are very few individuals that can claim to have founded a specialty but Christopher Woodhouse is one, and part of his professional legacy is the care he delivered to patients within his practice of adolescent urology from which he has now retired. He remains a phenomenal mentor to many including myself and having learned from his ability to deconstruct and analyse a problem, a similar approach can be applied to the future of adolescent urology.
The original realisation that patients with congenital anomalies of the urinary tract would need care beyond that offered by paediatric urology, lead to the creation of what is now termed ‘adolescent urology’. Thirty years on and the need and interest in this area is growing. Many centres across the UK and Europe now run a transition clinic. A survey of paediatric urologists across the UK in 2008 suggested there were 21 interested urologists to whom they referred (Woodhouse, personal communication). Recent developments have been the establishment of a dedicated section at the European Society of Paediatric Urology and a suggestion of wider interest in Europe . There is also the suggestion that centres across the USA are developing their interest, with at least one dedicated post in Indiana and further centres discussing their own interest.
The growth in interest is a tribute to the successful care offered by the entire paediatric fraternity (including surgeons, medical care, anaesthetic and intensive care) and development of this success has led to a serial change in expectations. It is not so long ago that significant numbers of patients with major congenital anomalies of the urinary tract would not have survived; in some societies there remains a far more active policy of termination of pregnancy than in the UK. Survival in these patients is never taken for granted but is now a reasonable expectation for many, despite the major surgical or medical challenges faced at a very early age.
Once survival becomes an expectation focus shifts to function and issues such as faecal and urinary continence. Intermittent catheterisation at an early age along with anticholinergic medication has altered the course of management for many babies and young children with a neuropathic bladder. The progress in urinary diversion from the ileal conduit and colostomy to the cystoplasty with Mitrofanoff, the artificial urinary sphincter and the Malone antegrade continent enema, have led to enormous changes in functional outcomes for these children and later young adults.
These changes have altered the practice of adolescent urology in two ways and those taking an interest in the specialty need to consider their approach in light of this.
The first is a simple mathematics problem that comes as a result of an expanding population of patients as a result of improved survival. Other patients who have asthma or diabetes will naturally move from a paediatric specialist through to an adult clinic who is accustomed to looking after the same. For those with major congenital anomalies of the urogenital tract there is not an equivalent service, many require long-term multidisciplinary care, very few locations have the facility to accommodate these patients. Clearly this is not a reflection on any individual capabilities more the need to have appropriate radiological, nephrological, endocrine, gynaecological and psychological support working cohesively.
There are two ways to achieve care for increasing numbers, the first is to increase the number of doctors involved in care. However, this requires enormous duplication in each centre and too rapid an expansion will create a service excess that will ultimately serve both patients and those caring for them badly. The second approach is to identify interested practitioners on a structured and regional basis; these would form a group of doctors (probably) with an interest who would link into a larger group. This allows training, networking and an adaptive approach to the multidisciplinary team either by bringing cases into a larger group on a periodic basis or by providing links with the use of technology.
The second progression is a shift in philosophy. This is equally important and understands that each of these patients deserves a life-long standard of appropriate care. If any other patient has prostate cancer, urolithiasis or a hernia they are entitled to expect a standard of care and to follow a pathway that is established. The challenge in patients with more common disorders is to ensure that established standards are met. In patients with much rarer conditions care is often bespoke and tailored to individual and complex scenarios. Of course, each specialty and each doctor deals with complex patients on an individual basis but they do so based on familiarity with an underlying disorder. Patients with complex congenital anomalies may be born at a rate of 20 per year or less in the UK and for these the only way that a similar familiarity and therefore standard of care is to concentrate expertise. This may not mean that all need to be seen in a single centre all the time but they could be seen by individuals with an interest whilst being linked with a ‘hub’ centre.
The coordination of these approaches would create some idealistic but not unrealistic opportunities. From a patient point of view a broadening of expertise with interest in more centres but central links would create a wider care network reducing some of the need for patients to travel in for each appointment and increasing access to expert care closer to home, both elective and non-elective. The central links further creates a bank of historical clinical information and the opportunity to bring problems into a larger centre when required. This is not new but is a model that has not been so readily applied in the benign disease setting. In a setting of rare diseases these networks could be national and in some cases international links may be beneficial.
The real adventure and perhaps the key to forward progress is the recognition that these patients do pass through childhood, adolescence and into adult life. From their point of view the progression is seamless and funding for their care needs to be the same. The formation of life-long networks that includes paediatric urologists and adolescent or adult counterparts is the next level of appropriate care for these patients. The most easily identifiable way of achieving this would be a diagnosis-linked funding stream. This has been achieved at paediatric level in the UK for bladder exstrophy, creating two recognised centres for the treatment of affected children. Such funding streams would be a significant step forward, as they would allow a very clear definition of the network within which these patients could be seen and treated. This must engender the best possible opportunity for clinical excellence. It also creates opportunities for prospective life-long audit of outcomes and the generation of research studies, where appropriate.
The current generation of adolescents have grown up in a media-driven society. It has always been challenging for those who have surgery in childhood to cope with the normal challenges of adolescence coupled with questions about their own chances of normality. We have a generation before them who have survived well and from whom we can give reassurance about survival and quality of life including professional, social and sexual function. However, society has raised the bar of expectation with the media drive for the ‘body beautiful’ and perfection. The drive appears to have no exceptions and this creates further questions for these patients about normality and their relationship to it. These can be difficult consultations that warrant a delicate balance between the realities of what can be achieved against expectations that can be wildly unrealistic. It should be said that such detachment from reality is not confined to this patient group but the context can make the resetting of expectations more difficult. Of course there are some for whom surgical intervention is appropriate and such judgements and the information required from both sides is complex.
There is no doubt that many patients have in the past and continue to receive excellent care. Their cumulative number and the complexity of their diagnoses and treatment, means that we have to look creatively at how to provide the best care for the next, expanding generation. Formalisation of networks caring for these patients will widen expertise and create better access to care for these patients with links to ‘hub’ centres, where and when required. The ideal way to cement such networks will be the creation of funding streams that links these patients into a network established for the lifelong care of their diagnosis. The potential for prospective, long-term data that further informs the generations to follow are of immeasurable value. Adolescence is defined as a period of growth, in urology we are currently a specialty that has the opportunity to develop in that way. This reflects the needs of both our current and future patients and a growing interest amongst urologists needs harnessing so that we develop well.