Transitioning from paediatric to adult health care can be a difficult and confusing process, particularly with the challenges of adolescence.
As advancements in medical technology and health care are made, survival of children with chronic disorders continues to improve and it is estimated that 90% of children with a chronic disorder, such as cystic fibrosis (CF), will reach adulthood. This highlights the need to implement the transition of care from paediatric to adult medical care. The goal of a planned transition is to achieve a reduction in the interruption of care, maximise well-being and improve quality of life.
Unfortunately, this transition period typically occurs during adolescence when patients are already struggling with the physical, emotional and psychological changes, made particularly more stressful when you have a chronic illness. It is also a time when the young person is trying to develop self-sufficient disease management skills and facing the ongoing expectations of the health care teams. The goals of a planned transition are to be well-timed and specific to each person, thus aiming to maximise lifelong functioning and well-being for all youth.
A structured transition program should include coordination and preparation between the paediatric CF centre, the patient, family and the adult CF centre. Allowing patients to interact with the adult team prior to transition and addressing specific issues can lead to a successful transition process.
Over the last five to six years a transition clinic has been established at Princess Margaret Hospital (PMH), now Perth Children’s Hospital (PCH) in Western Australia. Patients attend the transition clinic up to three times, where they and their family meet the adult team in the familiar, secure surrounding of their paediatric centre. Here, issues about transition are discussed, anxieties are allayed and preparation for the move to the adult centre begins. Fertility and sexual health education is also included in these transition clinic sessions. These appointments are commenced and continued throughout the teenage years in order to optimise the best possible outcome for a timely, sensitive and uninterrupted transition.
When appropriate, the first appointment at the adult centre, at Sir Charles Gairdner Hospital (SCGH), is arranged. The actual transition period ranges from 17–25 years, again centred around the needs of the individual.
The transition process in WA is a collaborative project between PCH, SCGH and Cystic Fibrosis WA (CFWA). A transition booklet, also part of the collaborative project, is used to give basic information. It provides guidelines such as; what to expect at the adult centre, what happens when a hospital admission is required, what to do in an emergency, how to get medications, home treatment and other helpful advice.
CFWA offer a transition tour, where a member of the CFWA services team take individuals and their family on a guided tour of the areas they are likely to visit as part of their treatment plan, and other areas of interest such as the newsagent, coffee shops and ATMs.
The future brings exciting changes.
For more information about the transition process or to arrange a transition tour, contact our community nurse Sharon on 08 6457 7333 or nurse@cfwa.org.au.
Article from RED Magazine, Edition 3, 2017.