Secondary progressive MS: the transition
Stephen Wilson1 and Wendy Hartland2
1 Cognitive Behavioural Psychotherapist, Burton and District Mind, Burton on Trent
2 MS Specialist Nurse, University Hospital Coventry, Coventry and Warwickshire NHS Trust, Coventry
Way Ahead 2012;16(2):8-9
This article discusses the experiences of living with the transition from relapsing remitting multiple sclerosis to secondary progressive multiple sclerosis and explores ways the roles cognitive behavioural therapeutic and mindfulness interventions may play in adjustment in managing the transition stage.
More information is needed on the transition to SPMS
Despite the transition from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS) being an expected part of the disease trajectory 1, unfortunately little is known about how or whether the experiences of those with the condition change with increasing disability2. Epidemiological studies indicate nearly 10% of people with RRMS reach the SPMS stage after five years, which increases to almost 25% at ten years and 75% at 30 years3. Research to date has mainly focussed on the physical aspects of the condition, describing the various symptoms of SPMS, such as fatigue, mobility problems, pain, sleep disturbances, visual problems, weakness, ataxia, spasticity, bulbar dysfunction, sexual dysfunction, and continence difficulties, commonly reported. Studies also indicated that approximately 50% of those with SPMS may also develop some cognitive impairment such as memory and information processing deficits4. With regard to the limited but available research on emotional problems, it is argued that rates of depression and anxiety are also considered to be greater in SPMS than in other forms of the condition5.
The effectiveness of cognitive behavioural therapy (CBT) to improve the psychosocial outcomes associated with MS has been demonstrated in a number of studies6. However, gaps are evident in the literature concerning the change in disease trajectory to SPMS, and a significant lack of literature exists concerning CBT and the transition from RRMS. This is perhaps unsurprising given the paucity of research concerning the experiences of people with SPMS and generally indicates that further research in this area is warranted.Importance of information sharing Edmonds et al4 argue that people with SPMS are involved in what they feel is a hopeless battle fighting for help with the condition. Despite National Institute for Health and Clinical Excellence (NICE) guidelines on management of MS in primary care affirming the need for information sharing, it appears this position is not being universally adopted. There is a further lack of continuity and coordination of care, linked with a perceived lack of information about services, aids and adaptations, and welfare benefits which results in a strong sense of people with SPMS needing to 'fight for everything'4. As MS is an autoimmune disorder, where the body is essentially fighting itself, the value of an additional fight has to be questioned. The unfortunate irony is symptoms are usually more predictable and stable in the SPMS stage8. However, for some people, being told they have SPMS can be as much of a shock as the initial diagnosis, with some people with MS living in fear of the word 'progression'. It could be argued the transition to SPMS forces people to rethink their later years and future aspirations. The role of clinicians within the information provision stage also has to be questioned, as some appear reluctant to inform people when they are in the progressive phase of MS8. Reasons why this is the case appear not to be evident within the literature, and is a further area worthy of research consideration. It could be speculated that this may be due to clinicians not being able to accept they have somehow failed to halt progression.
Emotional reaction to transition
Despite the problems associated with the lack of information concerning progression, emotional issues are not an inevitable consequence of SPMS9. However, the potential disease trajectory can lead to some people to believe they have an untreatable condition. This may partly explain the potential emotional reactions such as fear, anxiety, depression and reduced self-efficacy. This may accentuate a perception of loss, as according to the literature, SPMS results in significant physical and psychosocial losses. In particular, the fear of losing control appears to be significant. This can lead to maladaptive attempts to gain it back, such as giving up important responsibilities, which can result in the construction of an illness 'identity'. For example, people who may be struggling to effectively manage in the workplace may decide that it's an easier option to give up working altogether.
Despite the potential losses, such as occupational role, many people with SPMS eventually find they are able to cope with these fearful and difficult circumstances. Having a realistic mental attitude appears significant in helping to achieve this, as it can protect against the emotional consequences such as fear of the unknown, sadness, and the frustrations that can follow progression. This 'empowerment' appears to involve those with the condition avoiding grieving for things that are not within their control, engaging in positive self-talk, developing a proactive approach, avoiding blaming the condition on anyone else and reclaiming a sense of control by recognising choices still exist10.
Interventions to manage transition
It could be argued SPMS does not have the power to change who people are, or how they see themselves, unless they allow it to. Therefore, CBT type interventions, such as cognitive restructuring, can offer potential help in challenging unhelpful thoughts and encouraging people to check the accuracy and validity of their appraisals. By recognising psycho-educative aspects, such as 'thoughts aren't facts', and that 'just because you believe something, it doesn't mean it's true', people with SPMS could potentially be better able to recognise and to accept the actual losses of the condition, rather than catastrophise and worry about future ones that may never happen.
A further improvement in quality of life for those with SPMS can also be achieved by valuing day to day life experiences, living in the moment and by accepting the condition. This would suggest mindfulness offers a therapeutic opportunity. Mindfulness is defined as 'paying attention in a particular way: on purpose, in the present moment, and non-judgmentally,'11. A recent randomised controlled trial involving people with SPMS highlighted the benefits of mindfulness-based CBT interventions12.
People with MS potentially go through stages of denial and isolation, anger, bargaining, depression and finally, acceptance13. It could be argued the same process is repeated for people with SPMS and adjustment eventually occurs naturally. It is our position that CBT and mindfulness based practices could hasten this adjustment process and therefore could relieve emotional distress quicker. This may have relevance as anecdotal evidence would indicate that a decrease in emotional well-being, as a result of the transition in disease trajectory, may well have an impact on healthcare costs.
Consequently, it is recommended there is a paradigm shift towards specific research in SPMS, and that either oneto- one or group based CBT interventions are provided to assist people in adjusting to SPMS. However, given the lack of specialist practitioners within this field, and in order to reach the numbers of people potentially affected, it may be that alternative resources could be employed to reach the maximum number of people, such as self-help DVDs or online courses.
In conclusion, it has been suggested that the transition to SPMS can potentially have a detrimental effect on a person's assumptions about their well-being. It has been suggested CBT and mindfulness-based interventions offer utility in assisting with those emotional consequences that may be present, so that emotional problems are far from inevitable.
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- Edmonds P, Vivat B, Burman R, et al. Loss and change: experiences of people severely affected by multiple sclerosis. Palliat Med 2007;21(2):101-7.
- Tremlett H. Secondary Progressive Multiple Sclerosis. MS in Focus 2009;13:13-4.
- Edmonds P, Vivat B, Burman R, et al. 'Fighting for everything': service experiences of people severely affected by multiple sclerosis. Mult Scler 2007;13(5):660-7.
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- National Institute for Clinical Excellence. Multiple Sclerosis - Management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8. London: NICE; 2003.
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- Kabat-Zinn J. Wherever you go, there you are: Mindfulness meditation in everyday life. New York: Hyperion Books; 1994.
- Grossman P, Kappos L, Gensicke H, et al. MS quality of life, depression, and fatigue improve after mindfulness training. Neurology 2010;75(13):1141-9.
- Beiske AG, Svensson E, Sandanger I, et al. Depression and anxiety amongst multiple sclerosis patients. Eur J Neurol 2008;15(3):239-45.