New educational project to help newly diagnosed lupus patients
Lupus patients are set to benefit from a new research project aimed at improving the information they receive about their condition at the time of diagnosis.
Clinical nurse specialists based at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath, Sue Brown and Nicola Waldron, have been awarded a £27,282 educational project grant over two years from medical research charity the Arthritis Research Campaign.
The project will be carried out in collaboration with other lupus nurse specialists around the country.
Lupus is more common worldwide than multiple sclerosis. It is an auto-immune disease that can affect the skin, joints, kidneys and other internal organs and can range from mild to severe. It is often undiagnosed for years or misdiagnosed, as its symptoms are similar to other types of arthritis and rheumatic disease.
“Patients often spend many years before they are properly diagnosed, and many have symptoms that have a significant impact on their lives,” said Sue. “Coming to terms with a chronic, incurable disease like lupus can be difficult and the unpredictability of the condition leads to a lot of frustration.”
The focus group, along with six other centres with specialist lupus nurses, aims to find out the information needs of newly diagnosed patients. Too detailed information given to patients at the time of diagnosis can be as distressing as being told very little.
“We already know that giving too much information too soon when newly diagnosed with lupus can lead to increased incidence of anxiety and depression,” added Sue.
The results of the project will help nurses tailor educational information that strikes the right balance of being informative and not too frightening.
The idea for the project came from a network of specialist lupus nurses, funded by Lupus UK, who decided the best way to find out what patients wanted would be to run a series of focus groups.
Groups of six to eight patients will now be set up at the RNHRD, and five other hospitals around the UK, where a lupus nurse specialist is in post, where patients can share their views. Possible outcomes would be setting up group information forums, and the introduction of a telephone buddy system.
A spokeswoman for the Arthritis Research Campaign said: “Although we produce a lupus booklet for patients, as do Lupus UK, we fully understand the importance of giving patients the right information at the right time. We hope this new project will lead to a greater understanding of patents’ needs.”
