Secondary progressive MS: meeting the challenge of person centred care
Alison Smith, Rehabilitation Nurse Specialist
Derby City General Hospital
Way Ahead 2009;13(1):8-9
Ninety per cent of people who are diagnosed with a relapsing/ remitting course of multiple sclerosis develop secondary progressive MS within 25 years of onset. A significant proportion of these people make the transition much sooner1. For many, this transition represents a fundamental shift in the meaning of their condition; from periods of disability that were followed by complete or relatively complete recovery; to a phase of permanent and non-reversible accumulation of disability. The challenges posed by such a transition have been identified as a common theme of the enquiries handled by the MS Trust information team. Here, Alison Smith unravels some of the issues faced by people with MS and the health professionals who work with them, when confronted with the progressive phase of the condition.
Introduction
For a person who is diagnosed with relapsing remitting MS at onset; it can prove a very challenging time when they recognise that they are moving towards a progressive phase.
There are both positive and negative aspects to this transition and yet the general perspective held by people with MS tends to be more negative. Where does this belief come from? Is it possible that clinicians actually generate this belief in their patients as a result of their own perception of their position in relation to the person with MS?
People enter the healthcare profession to make people better, they generally have an innate desire to right that which is faulty - otherwise referred to as the 'righting reflex'. For people with relapsing remitting MS there are solutions to be found - disease modifying therapies, steroids for relapses; and multidisciplinary rehabilitation teams to aid recovery of lost function following a relapse. The person with MS is a recognised member of the team, everyone understands their role and everyone works hard to achieve maximum potential.
When an individual enters a progressive stage of MS, the potential to make things 'better' becomes restricted by the stubbornness of the disease. As clinicians our capacity to help the patient becomes compromised and more complex. Our 'righting reflex' has to be partially denied. We have to accept limitations to effect a functional change for the better in our patient. Do the boundaries imposed on us by this stage of MS lead to a negative nuance in what we say to patients?
There are some positive aspects to having secondary progressive MS. Symptoms are usually more predictable. Planning for life in general and special events in particular is easier against this more stable background. Yet it is not an unusual encounter for an individual with established progression to ask if they are secondary progressive yet. Obviously informing someone of their diagnosis is an unavoidable task but there is a general impression that some clinicians shrink from telling someone that they are now in the progressive phase of MS.
Secondary progressive MS represents a future living with some degree of permanent disability. If healthcare professionals cannot accept the limitations this imposes on them as professionals, how can they facilitate patients in adapting to and accepting (whatever that may mean) this progressive phase of MS?
If applied in the spirit of quality requirement 1 of the National Service Framework for Long Term Neurological Conditions; which stipulates that health and social care professionals must facilitate person-centred care and self management; the following approaches and strategies may support both the person with MS and the health professional in making this transition2.
A rehabilitation approach
Introducing a programme of rehabilitation at an early stage of secondary progressive MS can prove very beneficial to the person with MS. Rehabilitation professionals are experienced in facilitating adaptation to permanent disability, raising motivation and supporting lifestyle changes.
Selecting goals
Secondary progressive MS requires something of a shift of focus - clinicians need to be sensitive towards this in their approach to negotiating goals for the person with MS. Whereas people with relapsing remitting MS and their health professionals often have very similar ideas about what their goals should be and what they want to achieve with certain interventions; in secondary progressive MS physical goals tend to be about maintenance, health education and promotion. Motivating people to adhere to recommended exercise and healthy lifestyle changes with the goal of merely minimising further deterioration in function is much more challenging for the health professional than motivating people to work towards functional improvement.
There's no motivation in maintenance
Person with MS
Psychosocial needs
It is well recognised that people living with multiple sclerosis have ongoing psychosocial needs, but literature is sparse3. In the absence of clinical guidelines clinicians need to make greater effort to address this need. Listening is a powerful and underrated skill. To address psychosocial issues clinicians have to listen not only to patients' descriptions of their symptoms and experience of having MS, but also to the meaning of that experience for them. Listening in this way exposes the health professional to a deeper understanding of this condition and appropriate clinical supervision and support should be in place when difficult issues are raised. People with MS may well benefit from having a confidant but not everyone has an appropriate person to fulfil this role4.
Measurement
Though measurement is often a requirement, it can sometimes impede the relationship between a person with MS and the health professional, particularly where measurement is more a focus of the clinician's agenda than the individual's. For health professionals, the motive behind the measuring may have emerged out of enforced targets and validation of worth to managerial and political masters. But when deeper understanding of and insight into the individuals' experience of MS - quality of life - is the object being measured, listening to patient narratives may serve the purpose just as well, if not better than pre-defined measures. That is not to say that measurement, especially outcome measurement is not important; but clinicians need to be clear about what they are measuring and ensure that they gain informed consent for that measurement.
Referrals to other multidisciplinary team members
An interdisciplinary approach can be beneficial to both the patient and professional. The difference between a multidisciplinary approach and an interdisciplinary approach is defined below.
Multidisciplinary - Different professionals working in parallel, as part of a team, towards a common goal. Each has their own set of skills.
Interdisciplinary - Mixing and merging of roles and skills, still directed towards a common goal.
The approach that is taken in managing new symptoms also has implications for the patient and these need to be considered. If a patient discloses a new symptom, how that information is received by the health professional is important. Telling a patient that they will need to be referred to a specialist may amplify their concerns. However, asking for detail normalises the problem and validates its existence and implications. That is not to say that referrals shouldn't be made; rather that the professional should seek relevant detail to enable them to make a clinical judgement regarding treatment and risk. Clinically, first line management may be all that is required and should be given and reviewed in a timely fashion. The patient should be asked whether they wish to be referred as they may not be aware of this possibility and need time to consider it. It is important to be sure that a referral is what the patient wants and needs, rather than a means of satisfying the clinicians 'righting reflex'. Similar consideration should be given to the provision of assistive devices. Under-use and abandonment of assistive devices is well documented5.
Rehabilitation assessment
While listening to the narrative of experience can represent an important part of the assessment process, it is important that an underpinning structure is used to ensure nothing has been overlooked. Seeking the meaning for the patient of their MS should only supplement the understanding that is gained through robust assessment of the pathology, impairments and symptoms which may be responsive to treatment/therapy.
The following is an example of a framework for rehabilitation assessment that is used by a clinical team based in Derby. The framework is based on the World Health Organisation's International Classification of Functioning Disability and Health and was initially developed as an educational tool for medical students6. The latest version has the acronym 'REPAIR'.
Review
Review the pathology and impairments
Environment
What environmental factors (physical, social and attitudinal) are involved?
Participation
What is the person's level participation in life situations?
Activities & abilities
What are the person's abilities and level of activity? Do they match - do they wish them to?
Important others
Who are the important others in this person's life? How do they interact with the individual?
Risk
What social, psychological or physical hazards lie ahead? What preventive measures will contribute positively to quality of life?
The 'important others' category is most likely to be the category that is the least familiar to health professionals, yet evidence suggests that interactions with others have a significant impact on the learning process underpinning the process of transition7.
Conclusion
The writing of this article represents an attempt to bring together a theme which is evolving alongside the technical developments in MS care. While all health professionals are working towards providing a person-centred service, the reality of this is hard to accomplish. The move towards person-centred care requires personal reflection on the part of the professional. Consideration should be given to how health professionals influence and interact with patients; perhaps not so much in the clinical recommendations they may make, but in the more subtle aspects of human relationships, communication and interactions. In achieving this, health professionals must be prepared to explore every aspect of living with MS that an individual may wish to discuss, whether acceptable solutions exist or not.
References
- Trojano M, Paolicelli D, Bellacosa A, et al.
The transition from relapsing-remitting MS to irreversible disability: clinical evaluation.
Neurol Sci 2003; 24: S268-S270. - Department of Health.
The National Service Framework for Long-Term Conditions.
London: Department of Health; 2005. - Malcomson K, Dunwoody L, Lowe-Strong A.
Psychosocial interventions in people with multiple sclerosis: a review.
Way Ahead 2008; 12(1): 8-9. - Springham J, Skirton H, Freeman JA.
Exploring the relationship between people with MS and their confidants.
Way Ahead 2007; 11(1): 4-7. - Buckley B.
Prescribing assistive devices to people with MS: how do the views of patients and professionals compare?
Way Ahead 2008; 12(2): 5-7. - World Health Organization.
International Classification of Functioning, Disability and Health (ICF). [cited 2008; November 24] Available from URL: www.who.int/classifications/icf/en/ - Kralik D.
'Moving on': the transition to living well with chronic illness.
Way Ahead 2006; 10(3): 4-8.
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Way Ahead articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.
