The Impact of Living with Cystic Fibrosis

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Medical impact
CF is a chronic condition therefore the patients are either seeking medical attention or receiving (sometime involuntarily) a great deal of medical scrutiny and intervention during their lifetime.
Standard principles of care is the optimal service provided from the centre to improve prognosis for patients with CF. It uses multi-disciplinary approach with frequent clinical visits, physiotherapy to improve lung function and nutritional therapy that prevents malnutrition of pancreatic insufficiency and manages CF-related diabetes (Colomboa and Littlewood 2011, Cystic Fibrosis Trust 2011, Kerem et al. 2005)
CF multi-disciplinary team also undertakes clinical research of the condition, where new treatment and therapies are constantly exploring, becoming more effective. In the clinic whilst the patients wait to be seen by medical staff, they were often asked to complete a questionnaire or to participate in the studies. Some patients volunteered to take part in a clinical trial such as a Kalydeco trial.
Accurso (1997) found that at birth the lungs of CF babies are normal but soon, many become infected with bacteria. This bacterial infections cause chest exacerbations in the patients. A 14-day course of intravenous antibiotics is usually given to the patients (CF Trust, 2011). CF patients constantly seek medical attention for various reasons and in most cases, because of the exacerbations. However, hospital-based care is not always favoured by the patients, as it is disruptive for them and their families, taking patients away daily, work activities and social lives for considerable amounts of time (Sequeiros and Jarad 2009). Both consultants and physiotherapist encourage less interruptive patient-administered homecare....

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...of adults with cystic fibrosis. Journal of the Royal Society of Medicine 98(45), pp.S37-S46.

Pizzignacco, TM, de Mello DF, de Lima, RA. 2010. Stigma and cystic fibrosis. Revista Latino-Americana de Enfermagem 18(1), pp. 139-42.

Rosenstein, BJ, Zeitline, PC. 1998. Cystic fibrosis. The Lancet 351, pp. 277-282.

Sawicki, GS, Sellers, DE, Robinson, WM. 2009. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. The Journal of Cystic Fibrosis 8(2), pp. 91-96.

Sequeiros, IM, Jarad, NA. 2009. Home intravenous antibiotic treatment for acute pulmonary exacerbations in cystic fibrosis-Is it good for the patient?. Annals of Thoracic Medicine 4(3), pp. 111-114.

Visse, M, Abma, T, Oever, HVD, Prins, Y, Gulmans, Y. 2013. Perceptions of hospital admission in patients with cystic fibrosis. Journal of Hospital Administration 2(3), pp. 54-65.

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