Development of health support services for adults with spina bifida.

PURPOSE: To describe, within a state-wide transition framework, the pathway to improved health support services for adults with spina bifida. Our aim was to achieve adult care that addressed adult health issues, despite significant budgetary restraints and competition for the public health dollar. METHOD: A pilot clinical service project in one of the Area Health Services and a transition workforce study were carried out in the state of NSW in Australia. The advocacy skills of clinicians were harnessed. RESULTS: A regional adult spina bifida clinic was successfully created and patient resources were developed. Ongoing funding was not granted. A transition workforce study identified the poor clinic attendance of adult spina bifida patients and the high costs of hospital admissions for spina bifida related complications. Through advocacy and data provision, health funding was provided for two health support workers for a new service, the Spina Bifida Adult Resource Team. CONCLUSIONS: An effective transition to adult care is essential for chronic childhood illness, but young people with chronic illness often have no significant voice. Advocacy for public health spending requires compelling evidence which we were able to provide and which could be a model for other service providers.

Transition in chronic illness: Who is going where?

AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program. METHODS: Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients. RESULTS: Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology. CONCLUSIONS: There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention.

Transition care for young people with chronic illness.

Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and complex. The process often occurs when there are other significant transitions in a young person's life. Australia has a number of state-wide transition initiatives, which aim to address the consistent themes of transition including health care equity, information transfer between health services, consumer participation and the engagement of adult services. What is apparent is the need for the development of transition models, ideally by collaboration between paediatric and adult services, which can be trialed and evaluated in order to best inform how resources need to be distributed. It is also clear that there will be a number of models, defined by the specific disease process. There should always be an emphasis on the needs and wellbeing of young people with chronic illness and the acknowledgement that they should be supported in their quest to lead a normal life.