An Integrated Best Practice Service Model for Cystic Fibrosis in SA
PDF 465 KB
Cystic Fibrosis (CF) is a genetically inherited disorder, usually diagnosed via newborn screening. In South Australia, on average, 7 babies are diagnosed with CF every year (1 in 2800 live births).
South Australia has two specialist Cystic Fibrosis teams - an adult team based at the Royal Adelaide Hospital and paediatric team at the Women’s and Children’s Hospital.
Improvements in the management of cystic fibrosis in recent decades have dramatically changed the expectations and life journey for people living with Cystic Fibrosis and their families.
Services are required to address complexities faced by people with Cystic Fibrosis and their families both in terms of medical needs and more broadly in recognising and addressing psychosocial needs across the lifespan.
It is within this changing experience of Cystic Fibrosis that work to review current approaches and the development of a revised integrated model of care (PDF465KB) has been undertaken.
This work has involved close consultation and collaboration with people with Cystic Fibrosis and clinicians working within the specialised area.
The Patient Charter (PDF 166KB) describes the health care services people with Cystic Fibrosis have the right to expect and how children, teenagers and their parents/carers can contribute to gain the best possible results from their healthcare services