Patient education program to enhance decision autonomy in multiple sclerosis relapse management: A randomized-controlled trial

Unit of Health Sciences and Education, University of Hamburg, Hamburg, Germany.
Multiple Sclerosis (Impact Factor: 4.82). 10/2008; 15(1):96-104. DOI: 10.1177/1352458508095921
Source: PubMed

ABSTRACT Contrary to strong recommendations for high-dose intravenous corticosteroid treatment for relapses in multiple sclerosis (MS), uncertainty remains about most aspects of relapse management. Oral corticosteroids administered by physicians or patients themselves or no corticosteroids also appear justifiable.
To evaluate an education program that aims to involve patients with MS in decisions on relapse management.
In three German MS centers, 150 patients with relapsing MS were randomly assigned to a single, 4-h group session or a standard information leaflet. The primary outcome measure was the proportion of relapses with oral or no corticosteroid therapy as an indicator of patient autonomy in treatment decision making. Other outcomes included perceived decision autonomy, quality of life, and disability status.
In the intervention group (IG), 108/139 (78%) relapses were treated with oral or no corticosteroids compared with 101/179 (56%) in the control group; P < 0.0001. Patients' perceived autonomy of treatment decision making was significantly higher in the IG; P < 0.0001. Quality of life, disability status, and adverse events of corticosteroid therapies were comparable.
The patient education program led to more autonomous decision making in patients with relapsing MS. Relevant changes in relapse management were observed.

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Available from: Matthias Nübling, Sep 27, 2015
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    • "The program was compared to a two-page standard information leaflet. Participants were 150 relapsing MS patients with high disease activity from three German centers [17]. Based on existing guidelines recommending i.v. "
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    ABSTRACT: Patient autonomy has been increasingly acknowledged as prerequisite for successful medical decision making in Western countries. In medical decisions with a need to involve a health professional, patient autonomy becomes apparent in the extent of patients' participation in the communication as described in the concept of shared decision making. Patient autonomy can be derived from different perspectives or goals and the focus of evaluation approaches may vary accordingly. Multiple sclerosis (MS) is a paradigmatic disease to study patient autonomy mainly because MS patients are highly disease competent and due to ambiguous evidence on many aspects of disease-related medical decision making. This review gives an overview on measurement issues in studying decision making in MS, categorized according to prerequisites, process measures and outcomes of patient autonomy. As relevant prerequisites role preferences, risk attribution, risk tolerance, and risk knowledge are discussed. Regarding processes, we distinguish intra-psychic and interpersonal aspects. Intra-psychic processes are elucidated using the theory of planned behavior, which guided development of a 30-item scale to capture decisions about immunotherapy. Moreover, a theory of uncertainty management has been created resulting in the development of a corresponding measurement concept. Interpersonal processes evolving between physician and patient can be thoroughly analyzed from different perspectives by use of the newly developed comprehensive MAPPIN'SDM inventory. Concerning outcomes, besides health related outcomes, we discuss match of preferred roles during the decision encounters (preference match), decisional conflict as well as an application of the multidimensional measure of informed choice to decisions of MS patients. These approaches provide an overview on patient-inherent and interpersonal factors and processes modulating medical decision making and health behavior in MS and beyond.
    Journal of the neurological sciences 05/2013; 331(1-2). DOI:10.1016/j.jns.2013.02.018 · 2.47 Impact Factor
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    • "ity [ Sijens et al . 2008 ] . Since behavioral and pharmacological therapies are comparably effective in MS depres - sion , the effect of psychotherapy on lesion load and atrophy should be explored in future studies . A randomized controlled trial with 150 patients using patient education showed a decreased relapse rate in the intervention group [ Kopke et al . 2009 ] . However , no biological or paraclini - cal markers of disease activity were obtained , so this should be interpreted with caution ."
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    ABSTRACT: Behavioral interventions including exercise, stress management, patient education, psychotherapy and multidisciplinary neurorehabilitation in general are receiving increasing recognition in multiple sclerosis (MS) clinical practice and research. Most scientific evaluations of these approaches have focused on psychosocial outcome measures such as quality of life, fatigue or depression. However, it is becoming increasingly clear that neuropsychiatric symptoms of MS are at least partially mediated by biological processes such as inflammation, neuroendocrine dysfunction or regional brain damage. Thus, successful treatment of these symptoms with behavioral approaches could potentially also affect the underlying biology. Rigidly designed scientific studies are needed to explore the potential of such interventions to affect MS pathology and biological pathways linked to psychological and neuropsychiatric symptoms of MS. Such studies need to carefully select outcome measures on the behavioral level that are likely to be influenced by the specific intervention strategy and should include biomarkers with evidence for an association with the outcome parameter in question. In this overview, we illustrate how biological and psychological outcome parameters can be combined to evaluate behavioral interventions. We focus on two areas of interest as potential targets for behavioral interventions: depression and fatigue.
    Therapeutic Advances in Neurological Disorders 07/2011; 4(4):217-29. DOI:10.1177/1756285611405252 · 3.14 Impact Factor
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    • "The program consists of a single, 4-h group session and a comprehensive patient information brochure targeting MS relapse management . In a recently published randomized-controlled trial (EBSIMS, Evidence-Based Self-Management in MS relapses), performed between 2003 and 2006, we found considerable effects of the EBSIMS-program on relapse management [18]. In this trial with 150 persons with relapsing MS, we found that the program led to altered relapse management as in the intervention group significantly more relapses were treated with oral or no corticosteroids. "
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    ABSTRACT: To study the implementation of a patient education program on relapses and relapse therapy into routine care. 31 health care professionals took part in a one day train-the-trainer program (TTTP) and subsequently 261 persons with MS (pwMS) took part in the education program. Evaluation was carried out in trainers and pwMS. Participants (health professionals) in the TTTP understood the program's main goals and reported that the TTTP enabled them to successfully perform the program. The majority of participants in the program (pwMS) understood the core messages. Also, they showed increased risk knowledge and increased decision autonomy preferences. Treatment decisions were reported as autonomous or as "informed choice" in 49%, and as "shared decisions" by 45%. Overall, effects were less marked compared to the results of the underlying randomized-controlled trial. PwMS! appreciate evidence-based information about relapse management and view the unbiased presentation of scientific uncertainty as a chance for decision autonomy. The implementation study confirms the program's transferability into clinical practice.
    Patient Education and Counseling 04/2011; 86(1):91-7. DOI:10.1016/j.pec.2011.03.013 · 2.20 Impact Factor
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