Key learning points:
- MS is the most common cause of neurological disability in young adults
- Approximately 36% of people with MS suffer from anxiety, though at least half of these people remain undiagnosed and untreated
- The nurse has an important role to play in identifying that someone may be suffering from anxiety and helping them to access the right treatment and support
Multiple sclerosis (MS) is a disease of the central nervous system and is the commonest cause of neurological disability in young adults.1 There is no cure for MS although a blended, holistic approach consisting of neurorehabilitation, disease modifying drug treatment and symptom management can do much to mitigate its impact.2
There are both relapsing and progressive forms of MS; about 85% of people will have relapsing MS at diagnosis.3 Relapses can occur without any apparent trigger and are experienced as an acute deterioration of symptoms with full or partial recovery over ensuing weeks or months. This inevitably leads to a great deal of uncertainty for people with MS. About 15% of people will be diagnosed with progressive MS,3 these patients are much less likely to have relapses but will follow a more progressive course. People with primary progressive MS often have more spinal cord involvement and so are more likely to experience problems with mobility, bladder, bowel and sexual dysfunction as well as spasticity.
People with MS experience a wide range of different symptoms and presentation varies widely between individuals. Box 1 lists some of the more common symptoms people with MS may develop. The nature and severity of these symptoms fluctuates over time for each person.
Anxiety and MS
Whatever type of MS someone has, their lives are characterised by uncertainty and it is very difficult to give people an accurate prognosis on an individual basis. Diagnosis can be a particularly difficult time for people as they begin to come to terms with having a life-changing disease. Similarly, at times when people experience significant change related to their MS they also need to adjust and come to terms with their changing circumstances. For example, many people who follow an initial relapsing course will eventually transition into a more progressive disease course. This transition phase can be very difficult for people with MS and some have reported that being told they are developing secondary progressive MS ‘feels like getting their diagnosis all over again’.
Depression, low mood and anxiety are very common in people with MS with an estimated prevalence of anxiety disorders around 36%4 (compared to about 5% in the general population). Interestingly, there is also a much higher prevalence of anxiety reported in partners of people with MS than the general population (estimated at about 40%4) and it is important to bear this in mind when caring for people living with MS.
Anxiety is thought to occur as a reaction to living with the consequences and uncertainty of MS and there does not appear to be any correlation with disease activity (as shown on MRI scans), disease duration or level of disability.4 However, it is thought that people who are more recently diagnosed may be more likely to experience symptoms of anxiety as a significant association between anxiety, and fatigue, pain and a lower age of onset has been shown.5 People with MS may also of course develop anxiety as a result of other things happening in their life, just as anyone else might.
Anxiety can be both a symptom in its own right and a sign of depression. Some 50% of people with MS will experience a clinically significant episode of depression during their lifetime and rates of suicide among people with MS are approximately seven times higher than in the general population.6 A recent exploration of the availability of different services for people with MS showed that only 15% of MS specialist nurses and neurologists felt that provision of psychology and counselling services in their area was ‘good’.2 Access to psychological support can be difficult.
Anxiety is miserable and compounds symptoms of MS. It has also been shown to reduce quality of life and to impact negatively on adherence to treatment.4 We know that anxiety responds well to treatment,4 though the first and sometimes hardest step in treating anxiety is to identify it.
Spotting the symptoms
Symptoms of anxiety in people with MS are no different from those that anyone else may experience; these include increased heart rate, dizziness, trembling, frequency of micturition or diarrhoea, sleeplessness and fatigue. However, many people with MS who suffer from anxiety remain undiagnosed. Studies estimate that at least half of people with MS who have problems with anxiety are undiagnosed and untreated.4
Symptoms of anxiety are often wrongly attributed directly to MS, which means that the anxiety is overlooked. As nurses, we should be well placed to pick up and differentiate symptoms of anxiety from problems caused directly by MS. Be observant, watch for symptoms and ask people how they are coping. Listening to patients and getting to know them helps us to understand when they are feeling worried, concerned or have undue anxieties. It is also important to explain to people with MS and their partners about anxiety – how it can present and what it might feel like. This can be useful in helping people to self-report. There are also patient report questionnaires which can be used. The most accessible is perhaps the hospital anxiety and depression scale7 (HADS) which takes just a few minutes to complete and score. The scoring of the HADS allows a nurse or doctor to easily identify whether the patient is experiencing symptoms related to anxiety or depression and to distinguish between these, which can be useful.
Once someone is identified as having anxiety the next step is to consider treatment options. Studies estimate that fewer than 16% of people with anxiety are receiving treatment5 even though we know that treatment helps to ease, if not resolve, the symptoms. Once you have identified that your patient may be suffering from anxiety, it is important that you discuss this with them and have a conversation about possible next steps and treatment options. You may not be in a position to recommend treatment yourself. However, you will be able to explain the different approaches that can be considered to the patients and discuss with them how they want to proceed. You should also encourage them to contact their MS nurse or neurologist and, of course, their GP. The majority of people with MS will have an MS specialist nurse and they can be a very useful resource and can help to differentiate between anxiety and MS. Specialist nurses are also often able to offer first-line support to people with MS who are struggling to cope with the impact of their disease. The MS nurse or neurologist may also be able to refer the individual for psychological support; although psychological support is hugely under resourced and often difficult to access.
A recent survey of people with MS showed that only 1% reported seeing a psychologist in the previous 12 months.2
Treatment of anxiety
Approaches to treatment of anxiety tend to be divided into ‘talking’ therapies, drug medication and self-help.
‘Talking therapies’ such as cognitive behavioural therapy (CBT) or mindfulness training have been shown to be effective in helping people to cope better and ease symptoms of anxiety. CBT helps people to look at how their thoughts and feelings affect their behaviour – what we think affects what we feel and how we behave.8 People can get into unhelpful patterns of thinking about themselves or their situation, especially if they are feeling anxious. That can make people feel even worse and may in turn lead to behaviour that exacerbates the depression or anxiety. CBT helps people to break that cycle by teaching them different ways of thinking so they can turn the negative thoughts around, helping them approach a situation more positively.
Many people with MS also find mindfulness techniques can be helpful in combatting symptoms of anxiety.9 It has been defined as ‘…paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally’.9
Anti-anxiolytic mediations may also be helpful. There is no definitive contraindication to the use of these medications in MS and as always their suitability for an individual should be decided by a prescriber on a case-by-case basis. Anti-anxiolytic medications are sometimes used in MS to treat symptoms such as fatigue or neuropathic pain and so may actually have a dual benefit. The MS nurse or neurologist will always be happy to advise and it is important to let the MS team know if any changes are made to the medication regime of someone with MS who is under their care.
Not everyone who has symptoms of anxiety will necessarily need to be referred to a therapist or need to start taking medications. If symptoms are not too overwhelming, people may be able to find a way to manage their feelings of anxiety themselves with help from family and friends. Social support has been shown to help, as has relaxation and exercise. There are many different relaxation techniques and many of them can be practised easily at home, the key is to encourage patients to find a relaxation method that suits them and to practise it regularly. Exercise is also helpful and there are many options available; encourage people to find something they enjoy doing such as swimming, T’ai Chi or yoga.
Often just being able to talk about their concerns with a healthcare professional can help people understand how they are feeling and start to think about what they can do to help themselves. If feelings of anxiety persist, however, the person with MS should be strongly encouraged to seek help from a health professional, either their MS nurse or GP. MS specialist nurses are an invaluable resource and you should encourage patients with MS to contact their MS nurse or neurologist if you are concerned they may be suffering from ongoing anxiety. MS nurses will always be able to give you advice on management and support as well.
In summary, at least a third of people with MS will have problems with anxiety and this is usually related to the uncertainty and impact of living with MS; partners of people with MS also suffer from anxiety to a similar degree. Anxiety is underdiagnosed in people with MS, although the symptoms are the same as they are for other people. Recognising anxiety in people with MS is important, as anxiety responds well to treatment. There is also much that people can do to help themselves if symptoms are mild to moderate and nurses are well placed to help people find ways to manage their anxiety themselves. MS specialist nurses are a valuable resource in the management of people with MS and should be involved in their care.
1. Dutta R, Trapp BD. Mechanisms of neuronal dysfunction and degeneration in multiple sclerosis. Progress in Neurobiology 2011;
2. Roberts M, Mynors G, Bowen A. Improving services for people with advanced MS. MS Trust; November 2016. support.mstrust.org.uk/file/MSFV-AMS-report.pdf (accessed 9 December 2016).
3. Lublin FD, Reingold SC. Defining the clinical course of multiple sclerosis: results of an international survey. Neurology 1996;46:907-11.
4. Haussleiter IS, Brune M, Juckel G. Psychopathology in multiple sclerosis: diagnosis, prevalence and treatment. Therapeutic Advances in Neurological Disorders 2009;2:13-29 DOI: 10.1177/ 1756285608100325.
5. Beiske AG, Svensson E, Sandanger I et al. Depression and anxiety amongst multiple sclerosis patients. Eur J Neurol 2008;15:239-45.
6. Siegert RJ, Abernathy DA. Depression in multiple sclerosis: a review. J Neurol Neurosurg Psychiatry 2005;76:469-75.
7. Honarmand K, Feinstein A. Validation of the Hospital Anxiety and Depression Scale for use with multiple sclerosis patients. Mult Scler 2009;15:1518-24.
8 Grazebrook K, Garland A. What is CBT? 2005 babcp.com/files/Public/what-is-cbt-web.pdf (accessed 19 August 2016).
9. Simpson R, Booth J, Lawrence M et al. Mindfulness based interventions in multiple sclerosis – a systematic review. BMC Neurology 2014, 14:15 biomedcentral.com/1471-2377/14/15.