Background
Anti-tumour necrosis factor therapies (anti-TNFs) are an important recent development in the management of many autoimmune diseases, the first of which was licensed for rheumatoid arthritis (RA) by the European Medicines Agency in 1999. With approximately 12,000 new cases of RA per year in the UK, the number of people going on to receive anti-TNF is increasing. These medications have potentially serious adverse effects which largely relate to immune system suppression. For example, those on anti-TNF are at significantly higher risk of serious infection, and there is a theoretical increase in the risk of cancer.
Potential anti-TNF side effects can influence individuals' eligibility or desire to start treatment. The importance of effective patient education regarding RA and the potential benefits and risks of treatment is therefore acknowledged as important by many authors, and is a recognised way of improving patient concordance and adherance. The British Society of Rheumatology (BSR) emphasise the importance of ongoing patient education, empowerment and self-management in RA, and NICE highlight the importance of informed decision making in RA.
While there has been much work relating to patient preferences towards receiving general information and their involvement in clinical decision making, there is little that relates directly to anti-TNF therapy. We therefore aimed to gain understanding of patient experiences of starting anti-TNF medication, and explore their attitudes and expectations towards the information they received during this process.