What is multiple sclerosis?
Multiple Sclerosis or MS is a condition of the central nervous system which affects the nerves in the brain and spinal cord. The damage appears to be caused by the immune system mistakenly attacking a coating around the nerve called myelin.
MS is a lifelong condition and is the most common condition of the central nervous system affecting young adults. Although it can be diagnosed at any age, the majority of people are diagnosed in their 20s and 30s. It can cause serious disability, but it is possible to control symptoms and life expectancy is very good.
According to the MS Trust over 100,000 people in the UK have MS and it is nearly three times more common to present in women than in men. Symptoms in MS are very wide ranging and are particular to each individual. Not everyone will experience the same symptoms and they may even vary day to day for each person.
If you are worried you may be experiencing the early signs of MS please see your GP.
What is cognitive rehabilitation?
Cognition describes the way we:
- Concentrate and focus attention
- Do more than one thing at a time (multitask)
- Learn and remember new things
- Reason and solve problems
- Plan, carry out and monitor our own activities
- Understand and use language
- Recognise objects, compile things together and judge distances
Cognitive rehabilitation programmes used to treat other illnesses are provided by occupational therapists and psychologists in either a group setting or on a one to one basis.
In the CRAMMS trial, the cognitive rehabilitation will take place in groups of 4 to 6 people.
Why is cognitive rehabilitation important?
About 50% of all people with Multiple Sclerosis (MS) will have some form of difficulty at some time with elements of thinking, memory, attention span or concentration.
Problems with memory and thinking can really affect people with MS. The kind of problems that are more common in MS include difficulties with concentrating, being unable to find the right word (it's on the tip of my tongue) and short term memory problems. At present, people who have MS might not routinely receive any further therapy after they leave hospital to help with their memory problems.
Cognitive rehabilitation is a way of relearning the cognitive skills that may have been lost over time, and also helping people cope better with their cognitive problems. There is some evidence that memory rehabilitation may help lessen everyday forgetting, but this has not yet been proven conclusively by large-scale randomised controlled trials.
1. Who is running the CRAMMS study?
The trial is sponsored by The University of Nottingham and is led by Professor Nadina Lincoln and Professor Roshan das Nair from The University of Nottingham School of Medicine.
The study is being coordinated by the Nottingham Clinical Trials Unit (NCTU).
2. What is involved in the CRAMMS trial?
The CRAMMS trial will be comparing a cognitive rehabilitation programme for attention and memory with current clinical care to find out which is more effective.The cognitive rehabilitation programme will be investigating the benefits of using memory aids such as mnemonics - that is using patterns, words and images to remember details - and memory aids, such as diaries and, mobile phones and cameras.
The CRAMMS team will also be looking for other imaginative ways to help improve memory and lessen forgetting.
3. What is the purpose of the CRAMMS trial?
The purpose of this research is to help people with MS increase their ability to cope with their everyday memory problems so that they can get on with their lives and do the things that people take for granted, for example remembering to attend an appointment, locking the door, or recalling where they have put things.
4. What will happen if I take part?
You will be asked to read through a Participant Information Leaflet which will tell you all about the study.
The Assistant Psychologist at your local centre will contact you by telephone to explain the trial and answer any questions you have at this point. They will arrange an appointment with you for your first assessment, and then send you a letter to confirm.
Your first assessment is normally done at your home, at a research centre or in the community if you prefer. The Assistant Psychologist will explain the trial again and answer any questions you might have. If you wish to continue, you will be asked to sign a consent form. You will the complete some assessments to evaluate your attention and memory, and there will be a questionnaire booklet to complete. These will be used to see if you meet the eligibility criteria for the trial. This visit normally takes about 1 to 1½ hours.
If you do meet the criteria, the Assistant Psychologist will arrange a second appointment. They will send some questionnaires for you to complete in the post ahead of your appointment. The second appointment involves completing some further assessments of your memory and attention.
Again, this assessment is normally done at your home, or at the research centre or in the community if you prefer. It normally takes about 1 to 1½ hours.
Follow Up (Visits 3 and 4)
Everyone in the trial will have follow-up visits at 6 and 12 months after you were registered on the study. For these follow-up visits you will be asked to fill out some questionnaires and complete some assessments with one of our researchers. This assessment is normally done at your home, or at a research centre or in the community if you prefer. It normally takes about 1 to 1½ hours.
See the study flowchart.
5. Which group will I be in?
We use a computer based system to place participants into one of the two groups (rehabilitation and usual care alone). This process is called randomisation, and as the name suggests, is completely random. This means we don't know who will go into which group.
Everyone on the trial will have access to all currently available treatment and support. The only difference is that one group will also take part in the group-based cognitive rehabilitation programme.
6. How is CRAMMS funded?
More participant FAQs