Genetic Haemochromatosis: research question

Abstract

There is little research which examines patient’s thoughts and feelings of being diagnosed with a life-long disorder which requires life-long treatment in the form of venesection and which may lead to cirrhosis of the liver. Exploring patient symptoms prior to, and after venesections has not been studied fully, nor the implication if they are diagnosed with cirrhosis. In the initial phase of the disease venesections are undertaken weekly for many weeks/months. This may have a huge impact re time off work to attend treatment, cost of parking at the hospital etc. Understanding the effect of this on patients will enable the NHS to improve patient care.