BPC2008: Features of a good CF care centre
The features of an effective cystic fibrosis care centre were describedto the meeting by Stuart Elborn, professor of respiratory medicine atQueen’s University Belfast. This was during a session at the BritishPharmaceutical Conference 2008
The features of an effective cystic fibrosis care centre were described to the meeting by Stuart Elborn, professor of respiratory medicine at Queen’s University Belfast. This was during a session at the British Pharmaceutical Conference 2008.
Professor Elborn said that, although it mainly affects the lungs, cystic fibrosis also affects other hollow organs that are lined with epithelial cells. As the care of CF patients improves, other systems may be affected, either directly by CF transmembrane conductance regulator dysfunction or as a secondary effect from chronic inflammation. About 30 to 35 per cent of adult CF patients have diabetes, osteoporosis or liver disease, and (in males) infertility.
He added: “There is [also] the challenge of growing up with [this] chronic disease. People with cystic fibrosis have symptoms from early on in life and [we have to] develop strategies and treatments that are going to reduce those symptoms and improve their quality of life. … One of the aims of caring for cystic fibrosis [patients] is not to just increase survival, but to improve quality of life for the young people we are looking after.”
Cystic fibrosis centres are run by a multidisciplinary team that can help patients better manage their disease.
Professor Elborn listed the features of cystic fibrosis centres and teams as:
- focused on improving length and quality of life for people with cystic fibrosis
- multidisciplinary team approach with parents and people with cystic fibrosis at the centre
- well developed centres and networks
- patients put on a national register
- commitment to quality improvement
- a passion for patients
The team delivers a wide range of services, including direct access to advice and treatment, specialist investigations and procedures, transition to adult services, psychosocial support, transplant access and advice, home care services, genetic counselling and pregnancy and fertility services.
Key areas of care delivery include infection control, lung disease, nutrition, complications, psychosocial impacts and end-of-life care. Professor Elborn believes that improved survival for patients must bring improved quality and meaning to life: “We can add years to the lives of our patients by optimising delivery of treatments we already have.”
Citation: The Salvadore URI: 10036124
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