10 January 2009 Dear Editor, TRANSITION TO ADULT HEALTH CARE: THE IMPORTANCE OF DATA SYSTEMS The intention of my recent editorial1 about transition to adult health care was primarily to highlight the need for quality data systems in order to accurately determine the number of young people with chronic conditions who will need ongoing care within adult health services, whether provided by primary care or specialist services, in order to inform policy and planning. The additional point I wished to make was to suggest that data would not of itself drive quality practice for adolescents and young adults with chronic conditions due to the much larger number of older adults in the adult health-care system. I intentionally chose not to refer to any existing program in the editorial. Thus, I did not refer to the work of the Greater Metropolitan Clinical taskforce (GMCT) Transition Network in New South Wales,2 nor indeed to the hospital wide transition program within my own institution (http://www.rch.org.au/transition/) which, among other activities, has focused on developing appropriate linkages between paediatric and adult specialist health services. By no means did I intend to suggest that ‘nothing was happening’;3 indeed, I congratulate the authors on their progress. Notwithstanding the work of GMCT in New South Wales, our local program, or the policy framework that is expected to arise in Western Australia following a consultation process about transition to adult health care, I stand by my comments. I am not aware of any jurisdiction in Australia that has readily available data to inform clinicians and health-care planners alike about the number of young people with complex chronic conditions, let alone data that informs us about their satisfaction with health-care services, whether in specialist paediatric or adult services, or primary care. To some extent this reflects the complexity of measuring health and developmental outcomes in young people with chronic disease. It also highlights the lack of evidence within the transition literature, whether in relationship to models of transition services or about more basic elements such as the health outcomes of young people with chronic conditions who fail to make a smooth transition to adult services. Measuring the health outcomes of young people who are lost to follow-up after failing to transfer to adult services is – almost by definition – challenging. However, this is among some of the very data that could drive transition service development. Whole-of-hospital or statewide approaches that, using consistent tools, measure health outcomes and consumer satisfaction around transition, would be especially valuable as it is not yet clear which patient cohorts are (or should be) the priority for focused transition support; nor what type of transition support should be sufficient for the majority of adolescents with complex chronic disease. In this regard, it is important that health funders differentiate what transition support is required in the short to medium term in comparison to the nature of ongoing support services. Over the past few years, the Royal Children's Hospital (RCH) Transition Program has focused on developing service linkages between the RCH and various hospitals for disorders where the lack of appropriate adult services was the main barrier to appropriately timed transfer. Historically, significant difficulties were experienced trying to transfer young people with complex gastrointestinal disorders to adult services. Over the past few years, focused collaboration between gastroenterology services at the RCH and St Vincent's Hospital has resulted in a far smoother transfer process for most young adults. Within these services, rather than a continued focus on service development, an ongoing requirement for professional development is needed to ensure that paediatric and adult trainees understand the particular challenges experienced by young people with chronic diseases. Within other services, however, the nature of particular cohorts (such as those with palliative care needs), or the complexity of individual patients (such as those requiring input from multiple teams or providers), may determine that additional transition support will continue to be required despite appropriate service linkages. Tuchman, Slap and Britto4 recently commented that many transition programs are poorly documented and supported by limited evidence. Rather than suggesting that ‘nothing is happening’, I would urge those states and programs that are developing program models to ensure that critical evaluation of their programs contributes to the development of a more robust evidence base to support those who are not yet there. A stronger focus on quality data systems is part of this agenda.
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Sep 20, 2013
Jennifer Martin 
Open Access