SIG Patient Education
About us
At the GENUA CONFERENCE, 23-25 APRIL 2009, an initiative for a provisional new SIG was started focussing on educational interventions based on evidence-based patient information (EBPI) to enhance shared-decision making (SDM) in MS. After fruitful discussions with members of the SIG participation and a collaborative meeting with SIG participation and communication in November 2009, the initiative further elaborated around the planning of an European research project (see below). During the GÖTEBORG JOINT ECTRIMS/RIMS CONFERENCE, 13-15 OCTOBER 2010 the SIG was formally established.
Knowing risks and benefits of interventions, value of diagnostic tests and facts about prognosis gives the patient the opportunity to match these factors with his/her own values and increases the ability of shared decision making with health professionals. Therefore, evidence-based patient information (EBPI) that, similarly to a drug treatment, is rigorously developed, regularly updated and tested for effectiveness should be a major area of clinical research.
Why focussing shared-decision making? 
Integration and participation is the major goal of all medical and rehabilitative efforts referring to the International Classification of Functioning, Disability and Health (ICF, WHO 2001). By addressing SDM and thereby enhancing participation we emphasize that it is the ultimate target of health care, and improvement of impairment or surrogate markers are noteworthy provided that they are related to participation changes. Furthermore, most studies on chronically ill patient management have shown that not only participation in family, job and society but the active engagement of patients in their care is of major relevance to improve outcomes. Therefore, addressing SDM means empowering patients to gain mastery over their lives (J. Rappaport 1982).
While health might be more adequately conceptualized as the ability to adapt than complete physical, psychological and social well-being, measures to increase adaptive behaviour are training and education. Therefore, we believe that education is a major topic in rehabilitation. Other behavioural-educational interventions might focus psychological factors as e.g. disease coping, training groups or mindfulness-based meditation, neuropsychological dimensions, as meta-cognitive training or physical dimensions as exercise training. These are areas of stimulating overlap with other SIGs, nevertheless they are complex interventions whose content and effectiveness need to be fully documented. Education may lead to deeper processing of self-concept, more elaborated perceptions and weighting of symptoms and goals as well as judgment on the health care process.
- To establish EBPI as a first step in MS rehabilitation at the beginning of the disease on the basis of best practice and research
- To make EBPI devise and provision a central quality criterion in the management of people with MS (PwMS)
- To show that EBPI enhances active role realisations and possibly affects health behaviours and health status
- To more in general: enhance research on other behavioural interventions in MS f.e. exercise, mindfulness, metacognitive training
- To review educational concepts, patient information and decision support tools of MS rehab centres in Europe.
- To assess PwMS preferences in decision making and unmet needs in the area of patient information in Europe starting international collaborations.
- To systematically review, develop and test effectiveness of new MS information tools. Of primary relevance are diagnosis, prognosis, relapse management and immune therapy. Our final aim is that these tools are integrated in a comprehensive multi-cultural modular system of standardised and up-to-date educational instruments.
- To assess, develop and validate in different cultures MS risk knowledge tools. Again, of primary relevance are diagnosis, prognosis, relapse management and immune therapy.
- To develop and validate in different cultures tools to measure quality of patient-health communication in decision making.
- To initiate European comparative studies on MS risk knowledge and autonomy preferences and their matching to realized roles in medical decision making.
- To initiate collaborative randomised controlled trials (RCTs) with other SIGs on educational interventions in MS.
- To study factors relevant in MS decision making, especially in cooperation with the SIG neuropsychology.
- To offer a methodological platform for other SIGs to study complex interventions (e.g. devise and validation, design, conduct and analysis of RCTs).
A European project called “AutoMS” (for details see www.automsproject.org) on autonomy preferences, risk knowledge and decision making factors has recently been funded by the German Hertie-Foundation and the Italian MS Society (FISM). This project will prospectively evaluate preferences of pwMS patients regarding participation in medical decision-making and their determinants across six European countries with an associated partner in Australia, using shared methodologies and validated assessment tools. We will focus on most relevant decisions about disease-modifying treatment.
A first investigators’ meeting of AutoMS where all participating countries (Australia, Belgium, Estonia, Germany, France, Italy, Serbia) were present was held in Göteborg on October 15. New pictures for the Control Preference Scale (CPS) were presented. A risk knowledge questionnaire for RRMS was discussed as well as a tool to measure factors relevant for immunotherapy decision making, based on the concept of planned behaviour.
A first SIG Interim meeting was held in Hamburg from 22-23 January 2010 (for report please klick). During that meeting an overview about international research on risk communication/perception/shared-decision making, evidence-based patient information was given. Possible AutoMS collaborators were gathered (Report – to be unfolded).
A session on “Behavioural interventions in MS” was performed in the main programme of ECTRIMS in Goteborg in October 2010, focussing cognitive behavioural therapy in MS, mindfulness, trials on EBPI and molecular mechanisms in the mind-brain-body interaction.
A Cochrane Review Protocol (The Cochrane Library, Issue 10, 2010) on patient information interventions in MS has recently been accepted and will be performed under the auspice of S. Köpke and A. Giordano.
In AutoMS questionnaires will be linguistically validated in all the participating languages. Ethics approval wil be searched for where missing. An electronic-face to face equivalence study of the CPS will be performed in Italy and Germany early in 2011.
During the next RIMS meeting in Turku 3 sessions are planned:
An interim/AutoMS investigator meeting is planned in autumn 2011.
We want you!
But as our core group is still small, we invite you to join us.
Please feel free to contact the below mentioned chairs: C. Heesen, MD, Chair A. Solari, MD,
Neurologist
Hamburg, Germany
heesen@uke.de
Neurologist Co-chair
Milan, Italy
solari@istituto-besta.it