P 01 - 1 | Patient-specific measurement instruments for goal setting and scoring a research plan and first results (#15)
A. Stevens1,2, A. Beurskens1, A. Koke3,1, T. van der Weijden2
1Zuyd University of applied science Zuyd Health, Nieuw Eyckholt 300, Heerlen, Netherlands
2Maastricht University, School Caphri General Practice, Peter Debeyeplein 1, 6229 HA Maastricht, Netherlands
3Adelante Zorggroep Centre of Knowledge, Zandbergseweg 111, 6432CC Hoensbroek, Netherlands
Background: In rehabilitation there is an upcoming attention to client centred care and shared decision making and much attention is paid to patients’ questions and expectancies regarding the upcoming treatment. Patient-specific measurement instruments can support the process of goal setting and scoring and reflect the patients’ perspective. In rehabilitation several patient-specific instruments are used e.g. the Canadian Occupational Performance Measure (COPM); Patient Specific Functional Scale; Patient Specific Complaint; and the Goal Attainment Scaling (GAS). Although the use of these instruments improves client centred care, their use in daily practice is limited and often not clear.
Objective: The aim of this four-year research project is to improve the patient-specific instruments for goal setting and scoring. The following research questions are leading in this study:
What is known about the methodological quality and feasibility of patient-specific instruments?
How do professionals use patient-specific instruments in the process of goal setting and scoring in daily practice and what are the barriers? 3. How can the goal setting procedures be shaped and adapted to a better use, how can these improvements be implemented in daily practice.
Methods: To evaluate the methodological quality and feasibility of existing patient specific instruments, a systematic review was performed using a methodological scoring checklist. In the second phase of the study several qualitative studies will reveal the process of goal setting and scoring in daily practice. Up on these results an expert group of patients, professionals and researchers, will develop propositions for improvement and adaption of the process of goal setting and scoring. Next, implementation strategies will be developed and tested using the Consolidated Framework for Implementation Research model. In the last phase, the developed methods will be evaluated.
Results: The systematic literature review showed that there is evidence for the reproducibility, validity and responsiveness of the scoring of goals. At the conference we will present the results of the systematic review as part of the research plan.
Conclusion: The review confirms the methodological value of the scoring methods, but the process and feasibility of goal identification needs further research. Outcomes of the whole project will improve the patients’ involvement in treatment plans and the professionals’ competences in goal setting.
P 01 - 2 | Multi-language translation and cross-cultural adaptation of the patient-reported relapsing-remitting MS risk knowledge questionnaire on immunotherapy (RRMS-IRKQ): methodological issues (#52)
C. Heesen1, S. Köpke2, J. Kasper1, J. Drulovic3, A. van Nunen4, L. Vahter5, F. Viala6, G. Fulcher7, A. Giordano8, A. Solari8 on behalf of the AutoMS project.
1University Medical Center Hamburg-Eppendorf Institute for Neuroimmunology and Clinical MS Research (inims), Hamburg, Germany
2University of Lübeck Institute for Social Medicine, Lübeck, Germany
3University of Belgrade Institute of Neurology, Clinical Center of Serbia, Belgrad, Serbia and Montenegro
4National MS-Centrum, Melsbroek, Belgium
5West-Tallinn Central Hospital Department of Neurology, Tallin, Estonia
6Purpan University Hospital Department of Neurology, Toulouse, France
7MS Australia New South Wales, Lidcombe Australia
8Foundation IRCCS Neurological Institute C. Besta Unit of Neuroepidemiology, Milan, Italy
Objective: The Relapsing-Remitting MS Risk Knowledge Questionnaire on Immunotherapy (RRMS-IRKQ) is a patient-reported measure assessing knowledge about MS immunotherapy. It was developed in Germany from a pool of 197 item selecting those relevant for MS patients considering treatment decisions. The questionnaire consists of 17 items grouped into five domains: MS in general, diagnosis, prognosis, evidence-based medicine, and disease-modifying treatments.
We will produce cross-culturally adapted versions of the RRMS-IRKQ in the languages of the seven European countries participating in the AutoMS project (www.automsproject.org).
Methods: The RRMS-IRKQ was first translated into UK English by the following procedure: (1) independent translation into the target language by two qualified translators; (2) consensus forward translation produced by a multidisciplinary panel (forward translators and MS clinicians); (3) backward translation produced by a third qualified translator, blinded to the original version; (4) final version obtained by a multidisciplinary panel (all translators and MS clinicians) [1, 2].
After an online harmonization survey of AutoMS professionals on the English RRMS-IRKQ, the instrument was translated from UK English into Dutch (Belgium), Estonian, French (France), Italian, and Serbian in parallel, using the 4-step procedure reported above. Translation reports from each country were reviewed by the coordinating unit. Cognitive debriefing and focus group meetings of MS patients and health personnel are now being conducted in the seven participating countries.
Results: The online survey (21 participants from 7 countries) produced minor RRMS-IRKQ modifications that were also made on the original German version. Parallel translations were successfully completed in all participating countries between June and November 2011: only slight differences were identified in the structure of the sentences between the UK English and the translated versions. Cognitive debriefing and FGMs have been completed in Germany and will take place early in 2012 in the other countries.
Conclusion: The RRMS-IRKQ will be shortly available in multi-language versions that are both culturally appropriate and comparable in content for use in international studies.
Acknowledgements: The AutoMS project is supported by Fondazione Italiana Sclerosi Multipla, FISM (2010/R/37) and by the Hertie Foundation, Germany. A Giordano was supported by a FISM research fellowship (2009/B/4).
References
1. Guillemin F. Cross-cultural adaptation and validation of health-status measures. Scand J Rheumatol 1995;24:61-3.
2. Acquadro C, Conway K, Giroudet C, et al. Linguistic Validation Manual for Patient-Reported Outcomes (PRO) Instruments. Lyon, Mapi Research Institute, 2004:40–58.
P 01 - 3 | Development and preliminary validation of a short training for physicians to implement patient involvement into medical decision making (#72)
J. Kasper1,2, F. Hoffmann3, K. Liethmann4, S. Köpke5, C. Heesen6, F. Geiger7
1Unit of Health Sciences and Education University of Hamburg, Martin Luther King Platz 6, 20146 Hamburg, Germany
2Department of Primary Medical Care University Medical Center Hamburg, Martinistraße 55, 20246 Hamburg, Germany
3Institute of Communication in Medicine University of Hamburg, Martin Luther King Platz 6, 20146 Hamburg, Germany
4Insitute of Psychology University of Kiel, Olshausenstraße 11, 24106 Kiel, Germany
5Institute of Social Medicine University of Lübeck, Ratzeburger Allee 160, 23538 Lübeck, Germany
6Institute of Neuroimmunology and Clinical MS Research (INiMS) University Medical Center Hamburg, Martinistraße 55, 20246 Hamburg, Germany
7Tumor Center University Medical Center Schleswig-Holstein, Schwanenweg, 24105 Kiel, Germany
Objective: To develop and preliminary evaluate a training for doctors to enhance their ability to involve their patients into the process of making medical decisions. The training refers to the shared decision making (SDM) communication concept.
Methods: The training included a manual describing SDM-communication skills, a corresponding video tutorial with communication examples, and a face to face feedback referring to a record by the participating doctor. The training was developed based on materials of multiple sclerosis treatment decisions in cooperation with neurologist doctors and was piloted with members of two conference-workshops. 10 physicians participated in the training (4 MS-neurologists, 3 dentists, 3 general practitioners). Four consultations including medical decisions were recorded (total sample: N=40). Communication performance of doctors, patients and doctor-patient -dyads regarding SDM was assessed using the MAPPIN’SDM approach by trained observers and on self-administered questionnaires by doctors and patients. Effects of the training were determined using Wilcoxon tests comparing baseline with fourth consultations. After the training, physicians completed a questionnaire evaluating feasibility of the program.
Results: The face to face training sessions were short and feasible with regard to clinical reality. Participants considered the training motivating and supportive to acquire SDM skills. Recommendations were given to put more emphasis on the face to face feedback.
During training, communication improved according to observers’ rating doctors’ (p=.05) and doctor-patient-dyads’ (p=.07) and to doctor-questionnaires rating the dyads’ performance. No improvement was observed regarding patients’ SDM-behavior (p=.11); as well, patients’ judgments did not indicate improvement of the communication (p=.87).
Conclusion: The training is designed appropriately to clinicians’ needs. Improvement of risk communication after completion of the training encourages to investigating efficacy in a controlled trial. There is however need for further development to make implementation of new communication skills more likely.
P 01 - 4 | Patient education program on immunotherapy for persons with relapsing multiple sclerosis during rehabilitation – multi-centre controlled trial (ISRCTN83438362) (#126)
S. Köpke1, I. Backhus2, K. Fischer3, J. Kasper2, A. Brandt4, G. Bender5, C. Heesen3
1University of Lübeck Nursing Research Group, Institute for Social Medicine, Ratzeburger Allee 160, 23538 Lübeck, Germany
2University of Hamburg Unit of Health Sciences, Martin-Luther-King-Platz 6, 20146 Hamburg, Germany
3University Medical Center Hamburg inims, Martinistr. 52, 20246 Hamburg, Germany
4Segeberger Kliniken Neurological department, Hamdorfer Weg 3, 23795 Bad Segeberg, Germany
5RehaCentrum Hamburg Neurological rehabilitation, Martinistraße 66, 20246 Hamburg, Germany
Objective: Persons with multiple sclerosis (MS) want to be involved in treatment decisions. Despite an abundance of available patient information on immunotherapy, balanced, evidence-based patient information to support involvement and informed decision making are rare. Furthermore, patients often lack the opportunity to adequately reflect on information provided. Therefore, we have developed a multi-component education and information programme on immunotherapies in MS. The study aims to assess the effectiveness of the programme in the rehabilitation setting.
Methods: A controlled trial with 6 months follow-up was developed, pre-tested and finally carried out in three rehabilitation centres specialized in MS. In the intervention group (IG) participants received a 6-hour nurse-led interactive group education programme consisting of 2 parts and a comprehensive information brochure synthesizing the evidence on immunotherapy. Control group (CG) participants received standard information. Primary endpoint was “informed choice” after 6 months assessed with the “Multi-dimensional Measure of Informed Choice”. Further outcomes comprised decision autonomy, anxiety and depression, risk knowledge, self-efficacy, and fatigue. Data assessors were blinded to participants’ group allocation.
Results: A total of 163 patients were included (IG=80, CG=83). All participants in the IG attended the educational programme. In total, 30 patients dropped out of the study. The study was completed in December 2011 and results will be presented.
Conclusion: The programme was feasible and suitable for the rehabilitation setting. Still, there are some challenges in this setting that will be discussed.
P 01 - 5 | Shared Decision making or shared responsibility for decisions? — Feedback of MS-patients to a new patient educational program and consequences for neurologists (#132)
G. Lehrieder
Dr. Becker Kiliani-Klinik Neurology, Schwarzallee 10, 91438 Bad Windsheim, Germany
Objective: The concept of shared decision making (SDM) has been propagated in the last few years especially for treatment decisions in multiple sclerosis. Reality seems to be quite different. Patients often feel really alone with very complex questions especially concerning immunotherapy or feel dominated by neurologists. Shared decision making could be a clue to well-founded decisions and might a method to enhance compliance and adherence especially to chosen immunotherapies.
Methods: All patients with multiple sclerosis admitted to the Dr. Becker Kiliani-Klinik are referred to a multidimensional patient educational program with several modules addressing different aspects of multiple sclerosis. Some modules focus on topics concerning knowledge about medical facts on MS (e.g. immunotherapy, symptomatic therapy), others deal with coping MS, stress management and learning to enjoy life. Not all patients are attributed to all modules. Our new interactive lesson deals with decision making in multiple sclerosis. All patients are invited to take part in this unit as it seems to be important both to newly diagnosed and to experienced MS patients. In a survey we ask all participants about former decision processes and their opinion for potential effects.
Results: Patients who took part in the programme-module for decision making are not representative for all patients in our clinic. The vast majority had RR-MS and showed an EDSS-Score of <5.5 unlike to much more disabled patients with secondary progressive MS in our MS-cohort. Asked about their last decision in MS, e.g. regarding immunotherapy, one third reported that they had made this decision all alone without enough information, one third all alone after sufficient information. Only less than 10% described the way of decision making similar to SDM. After discussing different ways of decision making more than 90 % of the participants evaluated our patient education program to be helpful for further decisions.
Conclusion: In our point of view patient educational programs should include a lesson about decision making. This is important especially for patients in early stages of disease because in these stages initiating or changing therapies requires a lot of decisions. In order to play an active role in decision processes MS-Patients must be prepared. On the other hand neurologists must know their patients’ attitudes and expectations to find a way of decision making which is acceptable for both.
But not all patients claim this active role in decision making. More important than shared decision making seems to be “shared responsibility”. We will refine our education programme according to the patients’ feedback which is continuously monitored.
P 01 - 6 | Efficacy of ICF-based tools in goal setting and the rehabilitation process of people with neurological disorders (#135)
J. Jonsdottir, E. Gervasoni, M. Meotti, D. Cattaneo, A. Montesano
Foundation Don Gnocchi Neurorehabilitation, Via Capecelatro 66, 20148 Milan, Italy
Objective: The International Classification of Functioning, Disability and Health (ICF) is the universally accepted conceptual model for the description of functioning and disability. ICF-based tools have been developed to facilitate the use of the classification in rehabilitation but the usefulness of these tools in the rehabilitation process of people with neurological disorders is still to be verified. The objective with this pilot study was to evaluate the use of the ICF tools in the REHAB cycle (Rauch et al 2010) of people with multiple sclerosis (MS) or hemiparesis due to stroke. The persons comprehensive functioning status at the beginning of the program, the rehabilitation goals, the intervention plan, and their improvements in functioning following rehabilitation and the according goal achievements were illustrated with physical therapy–specific and multidisciplinary ICF-based documentation tools.
Methods: Eight persons, six with MS and two with stroke, were recruited and randomly divided into two groups (A and B). All were interviewed and subsequently classified with the appropriate ICF core set and the rehabilitation goals were agreed upon by subject, therapist and interviewer. Group A (3 MS, 1 Stroke) was then treated with the objective of achieving those goals while the group B (controls: 3 MS, 1 Stroke) followed usual care rehabilitation with therapists that were not informed of the results of the classification and the goals set. All subjects completed 15 rehabilitation sessions (3-4x weeks) and after had again an interview based on the ICF core set in which goal achievement was also verified. Subjects were evaluated pre and post rehabilitation with clinical scales (Berg Balance Scale, Dynamic Gait Index and Activities-specific Balance Confidence scale). Content of rehabilitation was documented and analyzed for both groups.
Results: Descriptive statistics were used to describe the individuals in case studies. Goal achievement was calculated as percentage achieved of set goals as quantified from the qualifiers. This graph (Fig. 1) depicts the achievement of global and cycle goals in the ICF group and in the control group. Persons in group A achieved a total of 55% (10/18) of the goals established, of which 44% were short term goals (STG, depicted in blue) and 11% were long term goals (LTG, depicted in red) (2/18). Persons in group B achieved a total of 33% (6/18) of their established goals, of which 28% were STG and 5% were LTG (1/18).
Conclusion: In accordance with Rauch and colleagues (2010) we demonstrated that the ICF can be a viable framework both for physical therapy and multidisciplinary management as well as for clinical documentation in persons with multiple sclerosis and stroke. The tools of ICF applied to the REHAB cycle were useful to demonstrate goal achievement and changes in functioning in response to rehabilitation.
References
1. Rauch A, Cieza A, Stucki G et al. How to apply the International Classification of Functioning, Disability and Health (ICF) for rehabilitation management in clinical practice. Eur J Phys Rehabil Med 2008;44:329–42.
