At the 14th RIMS Conference (Genoa, 23-25 April 2009), the initiative for a new SIG was launched, focusing on evidence-based patient information (EBPI) programs and other strategies to enhance shared-decision making (SDM) in MS. After fruitful discussions with members of the SIG ‘Participation’ and a collaborative meeting with ‘Participation’ and ‘Communication’ SIGs in November 2009, the AutoMS research project was devised (see ‘projects’). During the joint ECTRIMS/RIMS Conference (Göteborg, 13-15 October 2010) the SIG ‘Patient Education’ was formally established.
A new name: Why?
Education and empowerment of people with MS is at the core of our activities. Nevertheless, during the 2015 interim SIG meeting (Hamburg 26-28 November) it was convened that the term ‘education’ can evoke a passive role of the patient, and (at odds of the SDM model) asymmetry in the patient-clinician relation. ‘Patient Autonomy’ was thus considered a more appropriate name. Importantly, the new name matches the RIMS mission statement: ‘… to enhance activity, participation and autonomy of people with MS’ and is more goal-oriented. Finally, it emphasizes the link with self-management, empowerment and behavioral changes: we aim to interact with other SIGs involved in these overarching themes, and to jointly develop, test and disseminate tools and programs.
Why is information relevant?
Discerning the risks and benefits of medical interventions, the value of diagnostic tests and facts about disease prognosis gives the person with MS the opportunity to match these data with his/her own values, which is vital for SDM. Therefore, EBPI tools that are rigorously developed, tested for effectiveness, and regularly updated, should be a major area of clinical research. EBPI development, dissemination and maintenance is a long-lasting commitment, and internationally harmonized platforms are the way forward.
Why focussing shared-decision making (SDM)?
According to the International Classification of Functioning, Disability and Health (ICF, WHO 2001), patient integration and participation is the major goal of medical and rehabilitative strategies. By addressing SDM and thereby enhancing the participation of people with MS in their care, we emphasize that improvement in impairment, biomarkers and surrogate markers are noteworthy provided that they are related to participation changes. Furthermore, most studies on chronically ill individuals have shown that not only participation in family, job and society, but active engagement in their own care is of major relevance. Therefore, addressing SDM means empowering patients to gain mastery over their lives (J. Rappaport 1982).
The implementation of SDM also requires initiatives to enhance the SDM competencies of the health providers (‘…it takes at least two to tango’; D. Charles 1997). This can be achieved by programs to improve risk communication and relation-building skills of MS physicians, nurses, and therapists: another focus of our SIG!
Why is education relevant?
As health might be more adequately conceptualized as the ability to adapt than a complete physical, psychological and social well-being, training and education are vital to increase adaptive behavior and autonomy. Therefore, we believe that education is a major topic in rehabilitation. Education may lead to deeper processing of self-concept, more elaborated perceptions and weighting of symptoms, functioning and goals, as well as judgment on the health care process. Behavioral-educational interventions in the psychological (e.g. disease coping training groups, mindfulness-based meditation), neuropsychological (e.g. meta-cognitive training) and physical rehab field (e.g. exercise training) are other stimulating themes and a potential for productive interaction with other SIGs.
The 'Patient Autonomy' SIG (formerly 'Patient Education') is committed to understand the decisional needs of people with MS and health providers along the disease trajectory, and to support shared decision-making (SDM) in MS. Strategies to enhance patient self-management and coping are also at the core of our group.
- Design and evaluate evidence-based patient decision aids and behavioural interventions
- Develop and evaluate SDM and communication training programs for health professionals
- Design and validate of patient-reported outcome measures of knowledge and care satisfaction
The international project ‘Autonomy Preferences, Risk Knowledge and Decision-making Performance in MS Patients’ (AutoMS) prospectively evaluated preferences of people with MS regarding participation in medical decision-making, and their determinants. The project was granted by the German Hertie-Foundation and the Italian MS Society (FISM). Main activities occurred between 2005-2010, and are summarized below:
Upcoming projects address an educational module inclusive of a risk knowledge questionnaire (RIKNO) and learning videos, a motherhood choice decision aid (We-MoMS) and a tool to support patients in managing the transition from relapsing to secondary progressive MS (ManTra).
Adherence is another topic of interest: we are conducting qualitative and quantitative research on prediction measures for immunotherapy adherence, as well as for long-term adherence to physical activity/exercise.
We want you!
A large group is vital to achieve soon our objectives, involve new Countries, and elaborate new ideas. We thus invite you to join us, and to contact our chairs for more information:
C. Heesen, MD, Chair
A. Solari, MD,Co-chair