Abstract

KN 01 | Workshop: How to design a trial in motor/exercise rehabilitation (#44)
V. de Groot1,2
1VU University Medical Center Rehabilitation medicine, P.O. Box 7057, 1007 MB Amsterdam, Netherlands
2VU University Medical Center MS Center Amsterdam, P.O. Box 7057, 1007 MB Amsterdam, Netherlands
KN 02 | Workshop: How to design a trial in neuropsychological rehabilitation (#97)
P. Hämäläinen
Masku Neurological Rehabilitation Centre, Vaihemäentie 10, 21250 Masku, Finland
A recent review* based on 14 trials indicates low level positive evidence for the effectiveness of neuropsychological rehabilitation in MS. The review raised concerns about the quality of the studies evaluating the effects of neuropsychological rehabilitation in MS. Thus, more well-conducted trials on the effects of neuropsychological rehabilitation in MS are needed to strengthen the evidence. On the basis of the results of the review, some specific actions can be recommended to improve the quality of future studies. These include determining the aim of the intervention as well as primary outcome variables beforehand, collecting a sufficiently big and cognitively homogeneous sample, conducting adequate randomization and objective baseline measurement of cognitive status, blinding the assessor, detailed reporting of essential disease variables as well as intervention and assessment methods and timing, and conducting longitudinal follow-up to evaluate the permanence of the treatment effects. One of the important recommendations is to find and use measures which reflect the effects of treatment not only to cognitive tests but to everyday functions. Unifying the assessment and report practices concerning the effectiveness of interventions can be regarded as a golden aim.
During the workshop, the recommendations will be discussed and a trial on the effects of neuropsychological rehabilitation in MS will be designed.
References
*Rosti-Otajärvi EM, Hämäläinen PI. Neuropsychological rehabilitation for multiple sclerosis. Cochrane Database of Systematic Reviews 2011, Issue 11. Art. No.: CD009131. DOI: 10.1002/14651858.CD009131.pub2
KN 03 | Shared decision making as the basic approach to patient centred care – opportunities and limitations (#148)
A. Barratt
The University of Sydney Sydney School of Public Health, Sydney Medical School, Rm 323a, Edward Ford Building A27, 2006 NSW, Australia
To date, SDM has been operationalised largely through decision aids. The updated Cochrane Systematic Review shows that decision aids lead to improvements in patient knowledge, health care choices that are more consistent with patient preferences, patients participating more in decision making and positive effects on communication between patients and health care practitioners. Decision aids have variable effects on consultation length. Another approach has been to train doctors to behave in ways that promote SDM. To date, however, there is very limited evidence that this approach may be effective.
We have undertaken two projects to implement SDM using alternative approaches. In my talk I will present these studies as illustrative examples of innovative ways to implement SDM, and comment on the opportunities they present. One project harnessed the power of consumers rather than doctors to shift the consultation towards SDM. The study evaluated three questions posed by consumer advocate Karen Carey. The questions are designed to prompt doctors to discuss evidence that patients need to make health care decisions and thus to involve patients in decision making. We evaluated the questions in a trial using standardised patients who visited real family physicians and covertly audiorecorded their consultations. We found the questions were effective in increasing patient involvement as measured by the OPTION scale and succeeded in prompting doctors to present relevant evidence. In the second study, we built a website that enables cancer patients to search for cancer clinical trials they may wish to participate in, http://www.australiancancertrials.gov.au/. Cancer consumer groups in Australia lobbied for years for the website, believing it would be good for patients and for the community by promoting awareness of clinical trials and the benefits of participating in a trial as a treatment option. Australian Cancer Trials downloads data from the two main registries of clinical trials in Australia (the Australian New Zealand Clinical Trials Registry and the US based ClinicalTrials.gov) to provide a searchable set of trials that is always up to date. We evaluated the website in a cluster randomised trial with medical oncologists and their patients in two Australian states and found a trend towards a positive effect and strong support among consumers for the website.
In addition to the opportunities presented there are limitations to SDM. These include obvious and immediate limitations relating to the costs of implementing SDM and the impact on the nature and duration of consultations. Further limitations may be more subtle and may include individual, social and ethical challenges which will also be discussed.
KN 04 | Evidence-based patient information as a prerequisite for SDM (#151)
I. Mühlhauser
Universität Hamburg, MIN-Fakultät Gesundheitswissenschaft, Martin-Luther-King-Platz 6, 20146 Hamburg, Germany
Medical information is often biased, incomplete and misleading. A systematic review has shown that information in decision aids is frequently not evidence-based.
Most striking examples demonstrating lack of evidence of medical content are previous decision aids on menopausal hormone therapy. Evaluation studies claimed improvement of women’s knowledge and satisfaction with decisions. However, the provided information was wrong. On the benefit side a substantial reduction of cardiovascular disease was promised based on invalid interpretations of cohort studies. Later randomised controlled trials showed an increase of cardiovascular and other diseases.
Evidence-based patient information refers to both content and presentation of information. Criteria for the development have been defined. For example, the information should cover personalised risk and natural course of the disease, and all available options, including the option not to intervene. Information on possible benefit and harm should be presented as numbers, and using natural frequencies rather than changes in relative risk, with comparable reference populations and timeframes.
Even high quality clinical guidelines and associated patient guidelines do not provide the information necessary for informed decision making.
Tools for critical appraisal of decision aids such as IPDASi cannot be used to evaluate the evidence of the information content. Therefore, the quality of the core component of evidence-based patient information remains obscure.
For most preference sensitive medical decisions evidence-based decision support is still not available. In addition, often information is complex such as treatment options for patients with multiple sclerosis or most cancers. This requires information management outside the physician encounter and without time-pressure. Comprehension of the information should be documented before making decisions, both for health care providers and patients.
Development of up-to-date decision aids is time consuming. Identification, appraisal and synthesis of the evidence base are major resource limiting barriers. Study fact sheets as produced by independent institutions should be made freely accessible for users of evidence worldwide.
KN 05 | Cognitive behavioural interventions as a treatment choice for people with MS (#146)
R. Moss-Morris
King’s College London Institute of Psychiatry, London Bridge, London, SE1 9RT, Great Britain
KN 06 | The role of shared decision making in palliative care in advanced multiple sclerosis (#68)
E. Silber1, A. van Nunen2
1KIngs College Hospital Neurology, Denmark Hill, London, SE5 9RS, Great Britain
2Nationaal Multiple Sclerose Centrum vzw, Van Heylenstraat 16, 1820 Melsbroek, Belgium
KN 07 | SDM in MS care/rehab: Beyond patient-physician encounters. (#77)
V. Matthews
MS Trust MS, Spirella Buidlings, Letchworth garden City, SG6 4ET, Great Britain
This presentation will reflect on the skills/attributes required of the MS clinician to enable successful decision making that endures beyond the medical model into the life yet to be lived and those other decisions yet to be made.
The presentation will explore the “therapeutic use of self” and “sense of self” within the shared decision making process
Participants will have increased understanding of the insights and skills that will enhance their role within the shared decision making process and will have greater awareness of those extrinsic and intrinsic factors that influence any decision making
References
References will be provided within the presentation slide deck
KN 08 | Shared Decision Making in occupation reintegration programs in medical rehabilitation (#41)
S. Neuderth, M. Lukasczik, C. Gerlich
University of Wuerzburg, Institute for Psychotherapy and Medical Psychology Rehabilitation Sciences Section, Klinikstr. 3, 97070 Wuerzburg, Germany
The objective of the study was to examine the influence of SDM on the motivation to deal with vocational problems during inpatient rehabilitation as well as on patients’ satisfaction.
(1) 42% reported a formal involvement in terms of SDM;
(2) 16% reported a patient-oriented interaction in line with SDM (i.e., disclosing that a decision needs to be made and formulating the equality of partners, but no involvement in the actual decision, assuming not wanting to get involved);
(3) 15% reported no formal involvement (i.e., no disclosure that a decision needs to be made, no formulation of equality of partners) but a patient-oriented interaction and finally experienced the actual decision as a shared decision;
(4) 28% reported neither formal nor informal participation.
The different kinds of subjective participation were related to patients’ satisfaction but not to motivation.
References
Lukasczik, M., Wolf, H.D., Gerlich, C., Löffler, S., Vogel, H., Faller, H., Neuderth, S. (2011). Current state of vocationally oriented medical rehabilitation - a German perspective. Disability & Rehabilitation, 33, 2646–2655.
Kriston, L., Scholl, I., Hölzel, L., Simon, D., Loh, A., Härter, M. (2010). The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Education and Counseling, 80, 94–99.
KN 09 | SDM as a major concept in goal setting (#150)
D. Playford
UCL Institute of Neurology National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, Great Britain
Shared decision making is a process in which clinicians and patients work together to select tests, treatments, management or support packages based on the clinical evidence and the patient’s informed preferences. Guidance in the GMC’s Good Medical Practice states that doctors should ‘work in partnership’, and that this includes listening to patients, respecting their views, discuss diagnosis, prognosis, treatment and care, and maximizing patients opportunities and ability to make decisions for themselves.
It is clear that goal setting and shared decision have many elements in common. The factors that facilitate, and the barriers to using goal setting as a form of shared decision, will be identified and discussed.
KN 10 | Integrating goal setting and outcome measures in daily practice (#153)
K. Luyckx
Rehabilitationszentrum Valens Teamleitung Therapien Neurologie, 7317 Valens, Switzerland
References
1. Use of the ICF Model as a Clinical Problem-Solving Tool in Physical Therapy and Rehabilitation Medicine: W. Steiner et al. Physical Therapy. 2002; 82:1098–1107
2. Guide to Physical Therapist Practice. APTA, 2003
3. World Health Organisation. International classification of functioning, disability and health: ICF. Geneva: WHO, 2001
4. The development of ICF core sets for multiple sclerosis: results of the International Consensus Conference. M. Coenen et al. J Neurol 2011; Mar 4.
5. Rehabilitation measures in MS. S. Beer, F. Khan and J. Kesselring. MS Rehab J Neurol 2012: in Press
6. Assesments in der Rehabilitation – Band 1: Neurologie. S. Schädler et al. Verlag Hans Huber, Bern Book 2009
KN 11 | What can we learn from system neurosciences (fMRI, TMS) (#149)
F. Hummel
Universitätsklinikum Hamburg-Eppendorf Klinik und Poliklinik für Neurologie, Martinistraße 52, 20246 Hamburg, Germany
In the last years neurorehabilitation got more and more into the focus of system neuroscience. As for a long period neurorehabilitation was not addressed by neuroscientific approaches, most of the understanding and knowledge in the filed came from therapeutic approaches and clinical observations and evaluations. However, the understanding of underlying mechanisms was still poor and furthermore the degree of functional recovery based on the therapeutic strategies was not satisfactory with a need of development of additional therapeutic strategies.
To develop novel therapeutic strategies to enhance functional recovery and bring more patients after brain lesions back to their normal life it is of great importance to better understand the mechanism of functional reorganization and recovery after neurological diseases such as stroke or multiple sclerosis. By applying modern methods of systems neuroscience the understanding has been clearly enhanced in the last years, although there are still several open questions.
In the present talk examples will be presented how the use of systems neuroscience by means of functional brain imaging and brain stimulation can enhance the mechanistic understanding which is a crucial basis for the development of novel innovative therapeutic strategies. Nevertheless, it has to be pointed out that there are still several open questions which have to be clarified with the goal to achieve an understanding which allows to provide individualized innovative therapies adjusted to the needs and characteristics of the single patient, such as individual lesion site, impairment, time after lesion etc.
KN 12 | Neuroplasticity in MS (#152)
J. Claßen
Universitätsklinikum Leipzig Klinik und Poliklinik für Neurologie, Liebigstraße 20, 04103 Leipzig, Germany
Multiple Sclerosis (MS) leads to demyelinating and axonal injury of the central nervous system. A significant portion of the brain injury in MS is chronically progressive allowing gradual adaptation mechanisms to compensate for dysfunctional neuronal substrate. The presence of such mechanisms is suggested by the fact that disability may not easily be deduced from structural markers of brain lesion load. Using transcranial magnetic stimulation techniques adaptive mechanisms can be studied on multiple scales. Short-term plasticity, resembling long-term potentiation of excitatory neuronal synapses is induced by paired associative stimulation. In patients with mild-to-moderate MS, such rapid-onset neuronal plasticity was uncompromised, despite several plasticity-impeding factors. Functional activation studies in MS patients have demonstrated that performance of simple motor tasks may activate non-canonical brain regions. Virtual lesion induction by transcranial magnetic stimulation provided evidence suggesting that this activation is functionally relevant. Kinematic analysis of finger movements evoked by TMS allows for detailed analysis of how efficiently the central nervous system generates dexterous movements. Efficacy of precision or power grasping movement representation was differentially affected in mild-to-moderate MS. While power grasping organization was retained, neuronal organization of precision grasping movements was impaired, and impairment correlated with indices of brain injury, but not with indices of timed and accuracy of movement performance. Formation of long-range neuronal connections and recruitment of non-canonical brain regions likely are mechanisms underlying compensation of brain injury in MS. Reduced efficiency of motor control of dexterous movements may provide a pathophysiological model for impairment of movement independent of conventional functional assessments.
KN 13 | Arm rehabilitation using combined technologies: experiences with stroke, potential for use with MS (#147)
A. M. Hughes1, K. L. Meadmore2, C. T. Freeman2, J. H. Burridge1, E. Rogers2
1University of Southampton Health Sciences, University Road, Southampton, SO17 1BJ, Great Britain
2University of Southampton Physical and Applied Sciences, University Road, Southampton, SO17 1BJ, Great Britain
Upper limb dysfunction impacts on many activities of daily living such as feeding and dressing, and ultimately personal independence. The application of new technologies holds considerable promise for the provision of neurorehabilitation, which can reduce dysfunction. These technologies are being designed using neurophysiological principles and evidence based components that optimise recovery of function: increasing central nervous system (CNS) excitability; intensity of practice; early intervention; motivation both to maximise engagement and effort to comply with the training programme; and performance of functional and relevant personalised tasks.
Evidence already exists for the effectiveness of several different technologies in reducing neurological impairments, but can synergies be obtained by combining different types of technologies? Robots have the ability to provide repetitive practice and are being combined with iterative learning control (ILC) and electrical stimulation (ES). ILC is an advanced control system that uses previous performance to calculate ES parameters required to increase motor accuracy trial by trial. In this way, ILC provides enough ES to assist performance, whilst also encouraging participants to exert maximum voluntary effort for completing the task, an important factor associated with increased positive therapeutic effects. Robots are also being combined with non-invasive brain stimulation e.g. transcranial direct current stimulation (tDCS) to increase CNS excitability. Constraint induced movement therapy (CIMT), in which the user wears a glove on the hand of the unaffected limb to force use of the hemiplegic limb, is being combined with an internet-based application to motivate adherence to a rehabilitation programme.
Clinical results and participant perceptions from these feasibility and pilot studies are generating key findings which can be used to inform trials of the technologies for people with MS.
KN 14 | Biomechanics to understand gait rehabilitation (#43)
V. de Groot1,2
1VU University Medical Center Rehabilitation medicine, P.O. Box 7057, 1007 MB Amsterdam, Netherlands
2VU University Medical Center MS Center Amsterdam, P.O. Box 7057, 1007 MB Amsterdam, Netherlands
This presentation will show how gait analysis can help to understand the working mechanisms of interventions that can be applied in neurorehabilitation, and support the diagnostic work up of patients with walking problems.
