Lupus: what do people just diagnosed really want to know
Published on 01 January 2011
Being diagnosed with lupus can be frightening if not handled properly. Arthritis Research UK’s new information booklet will be based very much on what patients have told us they want to know. Jane Tadman reports.
A diagnosis of lupus can mean many different things. As our current lupus booklet acknowledges, the condition varies greatly from person to person: for some it represents little more than a nuisance; but for others the disease is very troublesome, even life-threatening.
This presents a problem when preparing patient information for patients – whether to bombard the newly diagnosed person with information about symptoms they may never develop, or keep quiet about potential complications and drive the patient to scour the internet to read scary, sometimes unreliable and inaccurate literature.
This was one of the reasons why Sue Brown, a specialist nurse in connective tissue disease at the Royal National Hospital for Rheumatic Diseases in Bath (known as the Min), was awarded a two-year Arthritis Research UK educational project grant to investigate the information needs of those newly diagnosed with lupus, now coming to an end.
With fellow nurse Nicola Waldron as study co-ordinator, Sue worked with lupus patient Barbara Elliott in the role of research partner and nurses from Lupus UK’s nurses’ network to set up a series of patient focus groups.
“We asked 43 lupus patients to reflect on their thoughts and opinions about their own experiences of receiving a diagnosis of lupus, and we then asked them to think about how they felt about this experience and whether or not it could have or needed to have been different,” explains Sue.
Analysis of the focus groups revealed three major themes. Firstly, that information about lupus received at diagnosis was scant and difficult to absorb, resulting in feelings of fear and confusion. Secondly, only a small number of patients received clear and consistent information. In fact, for many the information received was inappropriate, forcing them to find out for themselves which resulted in further distress. The final theme reflected that patients would rather be informed of potential problems than kept in ignorance. There was a unanimous feeling amongst all participants that provision of a comprehensive information booklet was essential at the point of diagnosis. This booklet would need to contain information about not only lupus itself, but other issues such as lifestyle management, exercise, fatigue, pregnancy advice and genetics, as well as acknowledging the psychological and emotional implications of the disease.
"As nurses we’re not that sure how much information to give to people, and whether we should be the ones making that judgment of only giving them what we thought they needed to know,” adds Sue. “What patients were saying was that they would rather have the information than live in ignorance. At least they can come to terms with it, and get their heads round having the condition; they were more frustrated not knowing.”
Patient educator Barbara Elliott is also involved in a liaison role in running a course with Sue Brown and other health professionals for lupus patients at the Min. The sessions cover how to cope and manage fatigue and bad days, how to live with the condition and medication. One of the most important functions of the group is for patients to meet fellow-patients – “so they know they are not alone,” says Barbara. “I would have loved to have attended such a course when I was first diagnosed.”
The Min is a nationally recognised centre for treating arthritis and rheumatic conditions, however, and not all hospitals are able to provide such patient services, so many lupus patients find they are more reliant on their rheumatologist to provide them with the right information.
"As nurses we’re not that sure how much information to give to people, and whether we should be the ones making that judgment of only giving them what we thought they needed to know"
Unfortunately, the common experience when receiving a diagnosis of lupus according to the focus groups was often for the rheumatologist to hand the patient the information booklet and leave them to it. Says Barbara: “That happened to me, and I feel very strongly that there needs to be some follow-up, once the news of the diagnosis has been digested. So that once you’ve had the diagnosis you go away, and then come back a week or so later and go through it again in more detail, so that you can take it in.”
Adds Sue Brown: “When people get diagnosed with lupus, it can be a very traumatic experience. They have often waited many months or years to get it, and had a number of diagnoses along the way. Suddenly they read a lot of scary stuff. A lot of newly diagnosed lupus patients ask me when they are going to get kidney involvement or, even more worrying, cerebral lupus. I say to them: “Let’s talk about your symptoms now and then we can discuss other problems if they occur.” Inevitably in our focus groups, some people wanted to know everything, and some, at the beginning, didn’t want to know an awful lot. They wanted information at the time that was right for them. Of course, what we produce won’t be ideal for everyone but we hope the information booklet we will produce working closely with Arthritis Research UK and Lupus UK will include all the issues that were raised in this research project.
“It’s the first project in which both charities will work together to produce patient information, and will be a true reflection of research findings developed into clinical practice to benefit lupus patients in the future.”
• Read about our major new research project looking for the genes that cause lupus in the April edition of Arthritis Today.
What is lupus?
Lupus, also known as systemic lupus erythematosus or SLE, is a potentially serious autoimmune, inflammatory disease that affects the skin, joints and internal organs, and in severe cases can be fatal. There is no cure and people with the condition may have to take medication for the rest of their lives. However, current drugs are not particularly effective and many sufferers have a poor quality of life.
Although Barbara Elliott was diagnosed with lupus eight years ago at the age of 57, she had actually lived with the condition since the age of 30. It was triggered, she believes, while she was pregnant with her third child, brought on by the trauma of the sudden death of her husband in a car accident.
She was tested, negatively, for multiple sclerosis, but medics at that time had no idea what was wrong with her, and Barbara didn’t push it. She lived with the condition for almost 30 years, struggling with extreme fatigue and aching joints, going to bed for a couple of days every now and again when the condition flared. It wasn’t until she retired and sold up her business that her condition deteriorated to such an extent that she again sought medical help. Says Barbara: “I was on holiday and couldn’t walk from one end of the beach to the other and realised that something was very wrong with me.”
This time doctors at the Min diagnosed Barbara with lupus within six months of her attending the hospital. Unfortunately she also developed Sjögren’s syndrome (see page 22), which is common in many people with lupus, and so also has to live with sore, dry eyes and mouth ulcers. For a time she was on methotrexate, but she now manages on steroid tablets.
Barbara now works closely with Sue at the Min, using her wealth of experience of living with the condition for the benefit of other newly diagnosed patients. She adds: “I’m not angry about not being diagnosed earlier as I know how difficult it is to diagnose – it’s not known as the great imitator for nothing. Everyone at the Min has been very good to me so I’m just happy to be able to put something back.”
For more information on Lupus you can read our new booklet online (PDF version): Lupus
Alternatively please call 0300 790 0400 or email us at firstname.lastname@example.org for a free paper version