A study has found that neuropsychiatric symptoms are very common in conditions like lupus, but the symptoms are often under-reported and under-recorded. They found that healthcare professionals guessed these symptoms were much less common than patients reported.
What are “neuropsychiatric symptoms”?
“Neuropsychiatric” (NP) symptoms refers to symptoms that involve the brain, the nervous system, or mental health. That means the term “NP symptoms” covers a wide range, including dizziness, headaches, tremors, anxiety, low mood, hallucinations, and seizures. Fatigue, one of the most commonly reported symptoms of lupus, can also be classed as an NP symptom.
What was the INSPIRE project trying to find out?
This study was trying to find out how common a wide range of NP symptoms are in systemic autoimmune rheumatic diseases, including lupus. The researchers were also interested in finding out if there were differences in how often patients experienced these symptoms compared to how common healthcare professionals thought they were, and what the barriers are to identifying these symptoms in appointments.
What did this study do?
There were two ways the researchers tried to find out about NP symptoms.
Firstly, they sent a questionnaire to three groups of people: patients with systemic autoimmune rheumatic diseases, people without these diseases, and healthcare professionals (rheumatologists, neurologists, and psychiatrists). This questionnaire asked about how often they experienced different NP symptoms (with the questionnaire for healthcare professionals asking what they predicted patients would say). Of the 1,853 patients who completed the survey, 566 (31%) had systemic lupus erythematosus (SLE). They compared what patients reported with what healthcare professionals estimated for people with SLE in particular.
Secondly, they interviewed patients and healthcare professionals to get more detail about what they thought, especially around the barriers to identifying the symptoms in appointments. Of the 67 patients they interviewed, 25 (37%) had SLE.
What did they find out?
1) People with systemic autoimmune conditions reported experiencing more NP symptoms than people without these conditions. The most common symptoms were fatigue, insomnia, and cognitive dysfunction (or ‘brain fog’). However, this study also found a wider range of symptoms, including low mood, tinnitus, and hallucinations.
2) Healthcare professionals estimated much lower levels of all NP symptoms than SLE patients actually reported. When they were told about the large differences, patients said they were not surprised, but most healthcare professionals said that they did not expect that and were concerned they had been missing symptoms in the patients they see.
3) From the interviews, the researchers found four main reasons why NP symptoms are under-reported:
- The healthcare professional didn’t have much experience or training in these symptoms, and many of the NP symptoms are not included in standard questionnaire assessments that they do.
- NP symptoms often can’t be seen or diagnosed by existing tests, like blood tests, so can be ‘invisible’. This also contributed to some patients feeling they were not, or would not be, believed.
- Healthcare professionals often don’t ask about these symptoms specifically, so the patient doesn’t report them. Some patients also said they were worried about talking about them in case their physical symptoms were then dismissed as being a mental health problem. Even when they did talk about them, some patients said these symptoms were not written down, so never recorded in their notes.
- NP symptoms can be difficult to describe, which makes reporting and recording them more difficult.
This study has been published and you can read the full article with all the details of the findings here.
What were the conclusions and recommendations?
The amount and range of NP symptoms is much higher than other studies have reported, and underestimated by healthcare professionals. The researchers said they think there is a cycle in which the symptoms are not asked about or reported in appointments, so people think they are not common, and so they continue not to be asked about or researched. To break this cycle, they said it was important that healthcare professionals ask patients about NP symptoms and believe what they say, and for patients to feel confident and trust they will be listened to and helped. They suggested that giving healthcare professionals more support, for example by different specialties working together and having more time and training, could help. They also suggested that including NP symptoms in the criteria and assessment questionnaires for these diseases could help healthcare professionals to ask more and to understand the importance of them.
What happens next?
The researchers plan to use these findings to try and improve the experience of people with these conditions who have NP symptoms. Their new projects are to investigate the impact of these symptoms on patients’ lives, to test new strategies for helping patients and doctors to have better conversations about NP symptoms, and to test new strategies to support the mental health of patients with systemic autoimmune rheumatic diseases. They are also trying to raise awareness of how common NP symptoms are in these conditions, so that doctors know they need to ask about them, and patients know they are not alone in experiencing them.
LUPUS UK are holding a Zoom webinar with two of the researchers (Melanie Sloan & Dr Chris Wincup) on Tuesday 1st August at 5:30pm. They will talk through their findings and you will have the opportunity to ask questions. If you would like to submit a question in advance, please contact Debbie Kinsey on firstname.lastname@example.org or 01708 731251. The webinar will be recorded and put on our YouTube channel so you can watch another time if you are not available on the 1st. Please feel free to submit questions even if you cannot attend live.
Join the webinar on Tuesday 1st August at 5:30pm via Zoom using the webinar ID 875 7092 9280 or click on this link: https://us02web.zoom.us/j/87570929280
- Talk to your rheumatologist:
If you are experiencing neuropsychiatric symptoms, talk to your rheumatologist about them. They can assess what the causes may be and refer you for support or treatment if needed. You may find our blog article on getting the most out of your medical appointments helpful in planning what you would like to say and how. If your doctor is not listening to you or believes these symptoms are not common, you can take in a copy of this article or the research paper to show them.
- Get mental health support:
The NHS offers different mental health services, such as counselling and helplines. Sometimes you have to be referred by a GP, and sometimes you can refer yourself. You can find what services are available in your local and how to access them on this page HERE.
- You need urgent support and need to talk to someone immediately:
If it is an emergency or you are in immediate danger, call 999 or go to A&E. Your mental health is just as important as your physical health and you are not wasting anyone’s time.
If it’s urgent but not an emergency, there are some NHS and charity services you can call:
- Call 111 or go to 111 online
- Find your local NHS England urgent mental health helpline here
- Find your local mental health charity helpline here
- Call a charity mental health helpline. You can find a list on the Mind website here. If you need to talk right now, these helplines are free and open at all times:
- Samaritans – 116 123 (UK-wide)
- A.L.L. – 0800 132 737 (Wales only)
- If you would prefer to text rather than talk, you can text SHOUT – 85258 (UK-wide)