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Multiple Sclerosis: HELP
Articles by Christoph Heesen
Based on 87 articles published since 2009
(Why 87 articles?)
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Between 2009 and 2019, C. Heesen wrote the following 87 articles about Multiple Sclerosis.
 
+ Citations + Abstracts
Pages: 1 · 2 · 3 · 4
1 Editorial Does the patient know best? Quality of life assessment in multiple sclerosis trials. 2014

Heesen, Christoph / Cohen, Jeffrey A. ·Institute of Neuroimmunology and Clinical MS Research, University Hospital Eppendorf, Germany. ·Mult Scler · Pubmed #24493700.

ABSTRACT: -- No abstract --

2 Editorial Don't stress about it! Is stress management a disease-modifying therapy for multiple sclerosis? 2012

Heesen, Christoph / Gold, Stefan M. · ·Neurology · Pubmed #22786585.

ABSTRACT: -- No abstract --

3 Editorial Treating multiple sclerosis with information. 2010

Heesen, Christoph. · ·Mult Scler · Pubmed #21041328.

ABSTRACT: -- No abstract --

4 Review Sexual dysfunctions in MS in relation to neuropsychiatric aspects and its psychological treatment: A scoping review. 2018

Pöttgen, Jana / Rose, Anita / van de Vis, Wim / Engelbrecht, Jannie / Pirard, Michelle / Lau, Stefanie / Heesen, Christoph / Köpke, Sascha / Anonymous3740938. ·Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. · Klinik und Poliklinik für Neurologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. · The Raphael Medical Centre, Tonbridge, United Kingdom. · Revalidatie Centre Roessingh, Enschede, Netherlands. · Sclerose Hospital Erne, Ry, Denmark. · National MS Centre, Melsbroek, Belgium. · University of Lübeck, Nursing Research Unit, Institute for Social Medicine and Epidemiology, Lübeck, Germany. ·PLoS One · Pubmed #29486006.

ABSTRACT: OBJECTIVE: Sexual dysfunction in multiple sclerosis (MS) is a significant, but often underestimated and overlooked suffering. Interventions to treat sexual dysfunction in MS are rare. The relation between sexual dysfunction in MS and psychological as well as neuropsychological aspects is evident. However, this field of research remains markedly underdeveloped in this severe chronic illness. The aim of this scoping review is to describe the relevant knowledge in this area and to identify psychological interventions to treat sexual dysfunctions in MS. METHODS: A scoping review was conducted to answer the following questions: (1) Which psychological and neuropsychological factors impact on sexual dysfunction in MS and vice versa? (2) What kind of psychological interventions aiming to improve sexual dysfunctions in MS are available? A comprehensive search and review of MEDLINE, PsycINFO, and CINAHL was completed by using a recent methodological framework for scoping reviews. RESULTS: 23 publications covering a total of 13,259 people with MS and 532 healthy controls were identified. Sexual dysfunction was found to be very common in MS and there is an obvious relation to psychological disorders as e.g. depression and anxiety and also to psychological aspects as partner relationship and quality of life. The relation between sexual dysfunction in MS and neuropsychological impairment has only rarely been studied and no clear results were found. Only two studies were identified, assessing the effectiveness of psychological intervention studies on sexual dysfunction in people with MS, and a third study presenting a secondary analysis of a study targeting depression. All three studies reported significant improvements in sexual dysfunction as well as partly in psychological variables. CONCLUSIONS: There is a pressing need for the development and adequate evaluation of psychological interventions for sexual dysfunctions in MS. In addition, sexual dysfunction and its impact on psychological wellbeing should be more focussed in clinical care. REGISTRATION: This review is registered with PROSPERO; Registration number: CRD42016033066.

5 Review Exercise in patients with multiple sclerosis. 2017

Motl, Robert W / Sandroff, Brian M / Kwakkel, Gert / Dalgas, Ulrik / Feinstein, Anthony / Heesen, Christoph / Feys, Peter / Thompson, Alan J. ·Department of Physical Therapy, University of Alabama at Birmingham, Birmingham, AL, USA. Electronic address: robmotl@uab.edu. · Department of Physical Therapy, University of Alabama at Birmingham, Birmingham, AL, USA. · Department of Rehabilitation Medicine, VU University Medical Centre, Amsterdam Movement Sciences and Amsterdam Neuroscience, Amsterdam, Netherlands; Department of Physical Therapy and Human Movement Sciences, Northwestern University, Chicago, IL, USA. · Section of Sport Science, Department of Public Health, Aarhus University, Aarhus, Denmark. · Department of Psychiatry, Sunnybrook Health Sciences Centre, Toronto, ON, Canada; Department of Psychiatry, University of Toronto, Toronto, ON, Canada. · Institute of Neuroimmunology and Department of Neurology, University Medical Center, Hamburg-Eppendorf, Hamburg, Germany. · Rehabilitation Research Center, Biomedical Research Institute, Faculty of Medicine and Life Sciences, Hasselt University, Hasselt, Belgium. · Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK. ·Lancet Neurol · Pubmed #28920890.

ABSTRACT: Exercise can be a beneficial rehabilitation strategy for people with multiple sclerosis to manage symptoms, restore function, optimise quality of life, promote wellness, and boost participation in activities of daily living. However, this population typically engages in low levels of health-promoting physical activity compared with adults from the general population, a fact which has not changed in the past 25 years despite growing evidence of the benefits of exercise. To overcome this challenge, the main limitations to promoting exercise through the patient-clinician interaction must be addressed. These limitations are the inadequate quality and scope of existing evidence, incomplete understanding of the mechanisms underlying the beneficial effects of exercise in people with multiple sclerosis, and the absence of a conceptual framework and toolkit for translating the evidence into practice. Future research to address those limitations will be essential to inform decisions about the inclusion of exercise in the clinical care of people with multiple sclerosis.

6 Review Patient education for people with multiple sclerosis-associated fatigue: A systematic review. 2017

Wendebourg, Maria Janina / Heesen, Christoph / Finlayson, Marcia / Meyer, Björn / Pöttgen, Jana / Köpke, Sascha. ·Institute of Neuroimmunology and Department of Neurology, University Medical Center, Hamburg-Eppendorf, Hamburg, Germany. · School of Rehabilitation Therapy, Queen's University, Kingston, Ontario, Canada. · GAIA AG, Hamburg, Germany. · Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany. ·PLoS One · Pubmed #28267811.

ABSTRACT: BACKGROUND: Multiple Sclerosis (MS) is an inflammatory and neurodegenerative disease often causing decreased quality of life, social withdrawal and unemployment. Studies examining the effect of pharmacological interventions demonstrated only minor effects, whereas non-pharmacological interventions as e.g. patient education programs have shown promising results. OBJECTIVE: We aim to systematically review the literature to determine the effect of patient education programs on fatigue in MS. METHODS: We conducted a comprehensive search in PubMed for randomized controlled trials (RCTs) that evaluated patient education programs for MS-related fatigue. Interventions evaluating physical exercise and/or pharmacological treatments were not included. Meta-analyses were performed using the generic inverse variance method. RESULTS: The search identified 856 citations. After full-text screening we identified ten trials that met the inclusion criteria. Data of 1021 participants were analyzed. Meta-analyses showed significant positive effects on fatigue severity (weighted mean difference -0.43; 95% CI -0.74 to -0.11) and fatigue impact (-0.48; -0.82 to -0.15), but not for depression (-0.35 (95% CI -0.75 to 0.05; p = 0.08). Essentially, we categorized patient education programs into two types: firstly, interventions with a focus on cognitive-behavioral therapy (CBT) and secondly, interventions that teach patients ways of managing daily fatigue. CBT-based approaches seem to generate better results in reducing patient-reported fatigue severity. Analysing CBT studies only, the pooled weighted mean difference for fatigue severity was -0.60 (95% CI; -1.08 to -0.11) compared to non-CBT approaches (-0.20; 95% CI; -0.60 to -0.19). Furthermore, interventions employing an individual approach seem to reduce fatigue more effectively than group-based approaches (pooled weighted mean difference for fatigue severity in face-to-face studies was -0.80 (95% CI; -1.13 to -0.47) compared to group-based studies with -0,17 (95% CI; -0,39 to 0,05). Longest follow-up data were available for 12 months post-intervention. CONCLUSION: Overall, included studies demonstrated that educational programs and especially CBT-based approaches have a positive effect on reducing fatigue. Since fatigue is thought to be a multidimensional symptom, it should be treated with a multidimensional approach targeting patients' behavior as well as their emotional and mental attitude towards fatigue. However, the clinical relevance of the treatment effects i.e. the relevance for patients' daily functioning remains unclear and long-term effects, i.e. sustainability of effects beyond 6 months, warrants further work. This review has been registered in the PROSPERO international prospective register of systematic reviews data base (Registration number: CRD42014014224).

7 Review Relapse in multiple sclerosis. 2015

Galea, Ian / Ward-Abel, Nicki / Heesen, Christoph. ·Clinical Neurosciences, Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Southampton General Hospital, Southampton SO16 6YD, UK I.Galea@soton.ac.uk. · Birmingham City University, Edgbaston, Birmingham, UK. · Institute for Neuroimmunology and MS, and Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. ·BMJ · Pubmed #25872511.

ABSTRACT: -- No abstract --

8 Review Regression to the mean and predictors of MRI disease activity in RRMS placebo cohorts--is there a place for baseline-to-treatment studies in MS? 2015

Stellmann, Jan-Patrick / Stürner, Klarissa Hanja / Young, Kim Lea / Siemonsen, Susanne / Friede, Tim / Heesen, Christoph. ·Institute for Neuroimmunology and MS (inims) and Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Department of Diagnostic and Interventional Neuroradiology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Department of Medical Statistics, University Medical Center Göttingen, Göttingen, Germany. ·PLoS One · Pubmed #25659100.

ABSTRACT: BACKGROUND: Gadolinium-enhancing (GD+) lesions and T2 lesions are MRI outcomes for phase-2 treatment trials in relapsing-remitting Multiple Sclerosis (RRMS). Little is known about predictors of lesion development and regression-to-the-mean, which is an important aspect in early baseline-to-treatment trials. OBJECTIVES: To quantify regression-to-the-mean and identify predictors of MRI lesion development in placebo cohorts. METHODS: 21 Phase-2 and Phase-3 trials were identified by a systematic literature research. Random-effects meta-analyses were performed to estimate development of T2 and GD+ after 6 months (phase-2) or 2 years (phase-3). Predictors of lesion development were evaluated with mixed-effect meta-regression. RESULTS: The mean number of GD+-lesions per scan was similar after 6 months (1.19, 95%CI: 0.87-1.51) and 2 years (1.19, 95%CI: 1.00-1.39). 39% of the patients were without new T2-lesion after 6 month and 19% after 2 years (95%CI: 12-25%). Mean number of baseline GD+-lesions was the best predictor for new lesions after 6 months. CONCLUSION: Baseline GD-enhancing lesions predict evolution of Gd- and T2 lesions after 6 months and might be used to control for regression to the mean effects. Overall, proof-of-concept studies with a baseline to treatment design have to face a regression to 1.2 GD+lesions per scan within 6 months.

9 Review Information provision for people with multiple sclerosis. 2014

Köpke, Sascha / Solari, Alessandra / Khan, Fary / Heesen, Christoph / Giordano, Andrea. ·Nursing Research Unit, Institute of Social Medicine, University of Lübeck, Ratzeburger Allee 160, Lübeck, Germany, D-23538. ·Cochrane Database Syst Rev · Pubmed #24752330.

ABSTRACT: BACKGROUND: People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. Among others, these include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies and non-pharmacological interventions. It has been shown that people with MS demand adequate information to be able to actively participate in medical decision making and to self-manage their disease. On the other hand, it has been found that patients' disease-related knowledge is poor. Therefore, guidelines have recommended clear and concise high-quality information at all stages of the disease. Several studies have outlined communication and information deficits in the care of people with MS and, accordingly, a number of information and decision support programmes have been published. OBJECTIVES: To evaluate the effectiveness of information provision interventions for people with MS that aim to promote informed choice and improve patient-relevant outcomes. SEARCH METHODS: We searched the Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Group Specialised Register which contains trials from CENTRAL (The Cochrane Library 2013, Issue 6), MEDLINE, EMBASE, CINAHL, LILACS, PEDro and clinical trials registries (12 June 2013) as well as other sources. In addition, we searched PsycINFO, trial registries, and reference lists of identified articles. We also contacted trialists. SELECTION CRITERIA: Randomised controlled trials, cluster randomised controlled trials and quasi-randomised trials comparing information provision for people with MS or suspected MS (intervention groups) with usual care or other types of information provision (control groups) were eligible. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed the retrieved articles for relevance and methodological quality, and extracted data. Critical appraisal of studies addressed the risk of selection bias, performance bias, attrition bias and detection bias. We contacted authors of relevant studies for additional information. MAIN RESULTS: Ten randomised controlled trials involving a total of 1314 participants met the inclusion criteria and were analysed. The interventions addressed a variety of topics using different approaches for information provision in different settings. Topics included disease-modifying therapy, relapse management, self-care strategies, fatigue management, family planning and general health promotion. The interventions contained decision aids, educational programmes, self-care interventions and personal interviews with physicians. All interventions were complex interventions using more than one active component, but the number and extent of the intervention components differed markedly between studies. The studies had a variable risk of bias. We did not perform meta-analyses due to marked clinical heterogeneity. All four studies assessing MS-related knowledge (524 participants; moderate-quality evidence) detected significant differences between groups as a result of the interventions indicating that information provision may successfully increase participants' knowledge. There were mixed results from four studies reporting effects on decision making (836 participants; low-quality evidence) and from five studies assessing quality of life (605 participants; low-quality evidence). There were no adverse events in the six studies reporting on adverse events. AUTHORS' CONCLUSIONS: Information provision for people with MS seems to increase disease-related knowledge, with less clear results on decision making and quality of life. There seem to be no negative side effects from informing patients about their disease. Interpretation of study results remains challenging due to the marked heterogeneity of the interventions and outcome measures.

10 Review Validating predictors of disease progression in a large cohort of primary-progressive multiple sclerosis based on a systematic literature review. 2014

Stellmann, Jan-Patrick / Neuhaus, Anneke / Lederer, Christian / Daumer, Martin / Heesen, Christoph. ·Institute for Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Sylvia Lawry Centre for Multiple Sclerosis Research, Munich, Germany; Trium Analysis Online GmbH, Munich, Germany. · Sylvia Lawry Centre for Multiple Sclerosis Research, Munich, Germany. ·PLoS One · Pubmed #24651401.

ABSTRACT: BACKGROUND: New agents with neuroprotective or neuroregenerative potential might be explored in primary-progressive Multiple Sclerosis (PPMS)--the MS disease course with leading neurodegenerative pathology. Identification of patients with a high short-term risk for progression may minimize study duration and sample size. Cohort studies reported several variables as predictors of EDSS disability progression but findings were partially contradictory. OBJECTIVE: To analyse the impact of published predictors on EDSS disease progression in a large cohort of PPMS patients. METHODS: A systematic literature research was performed to identify predictors for disease progression in PPMS. Individual case data from the Sylvia Lawry Centre (SLC) and the Hamburg MS patient database (HAPIMS) was pooled for a retrospective validation of these predictors on the annualized EDSS change. RESULTS: The systematic literature analysis revealed heterogeneous data from 3 prospective and 5 retrospective natural history cohort studies. Age at onset, gender, type of first symptoms and early EDSS changes were available for validation. Our pooled cohort of 597 PPMS patients (54% female) had a mean follow-up of 4.4 years and mean change of EDSS of 0.35 per year based on 2503 EDSS assessments. There was no significant association between the investigated variables and the EDSS-change. CONCLUSION: None of the analysed variables were predictive for the disease progression measured by the annualized EDSS change. Whether PPMS is still unpredictable or our results may be due to limitations of cohort assessments or selection of predictors cannot be answered. Large systematic prospective studies with new endpoints are needed.

11 Review Depressive syndromes in neurological disorders. 2013

Hellmann-Regen, Julian / Piber, Dominique / Hinkelmann, Kim / Gold, Stefan M / Heesen, Christoph / Spitzer, Carsten / Endres, Matthias / Otte, Christian. · ·Eur Arch Psychiatry Clin Neurosci · Pubmed #24077889.

ABSTRACT: Depressive syndromes represent a common and often characteristic feature in a number of neurological disorders. One prominent example is the development of post-stroke depression, which can be observed in more than one-third of stroke survivors in the aftermath of an ischemic stroke. Thus, post-stroke depression represents one of the most prevalent, disabling, and potentially devastating psychiatric post-stroke complications. On the other hand, depressive syndromes may also be considered as a risk factor for certain neurological disorders, as recently revealed by a meta-analysis of prospective cohort studies, which demonstrated an increased risk for ischemic events in depressed patients. Moreover, depressive syndromes represent common comorbidities in a number of other neurological disorders such as Parkinson's disease, multiple sclerosis, or epilepsy, in which depression has a strong impact on both quality of life and outcome of the primary neurological disorder.

12 Review Patient autonomy in multiple sclerosis--possible goals and assessment strategies. 2013

Heesen, C / Köpke, S / Solari, A / Geiger, F / Kasper, J. ·Institute of Neuroimmunology and Clinical MS Research, University Medical Center Hamburg, Hamburg, Germany. heesen@uke.uni-hamburg.de ·J Neurol Sci · Pubmed #23711752.

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.

13 Review Behavioral interventions in multiple sclerosis: a biopsychosocial perspective. 2012

Heesen, C / Köpke, S / Kasper, J / Poettgen, J / Tallner, A / Mohr, D C / Gold, S M. ·University Medical Center Hamburg-Eppendorf, Institute for Neuroimmunology and Clinical MS Research and Department of Neurology, Hamburg, Germany. heesen@uke.uni-hamburg.de ·Expert Rev Neurother · Pubmed #23039388.

ABSTRACT: Managing uncertainty is a major challenge associated with the diagnosis of multiple sclerosis (MS). In addition to physical symptoms, neuropsychiatric symptoms are highly prevalent in this disease. Depression in particular is more common in MS than in other chronic diseases. While substantial achievements have been made in the therapy of MS and an increasing number of immunomodulatory treatments are now available, the long-term benefits of these are still a matter of debate. Importantly, while the approved therapies show good efficacy on inflammatory lesions and relapse rate, and may slow certain aspects of disease progression, improvements in function have rarely been reported. On the other hand, behavioral interventions have recently been shown to significantly improve fatigue and depression as well as motor function. In addition, recent evidence suggests that group education or face-to-face behavioral interventions may decrease inflammatory disease activity (such as relapse rate or lesion formation measured by MRI). Therefore, behavioral interventions not only ameliorate symptoms but may have the potential to modify the disease process itself.

14 Review Accuracy of diagnostic tests in multiple sclerosis--a systematic review. 2011

Schäffler, N / Köpke, S / Winkler, L / Schippling, S / Inglese, M / Fischer, K / Heesen, C. ·Institute of Neuroimmunology and Clinical MS Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. ·Acta Neurol Scand · Pubmed #21070192.

ABSTRACT: New diagnostic criteria for multiple sclerosis (MS) have been recently proposed and further updates are upcoming. This systematic literature review summarizes diagnostic studies in suspected MS to clarify the value of diagnostic tests. We included studies of at least 40 patients followed up for 2 years. All studies are limited by the fact that no gold standard to validate diagnostic tests is available. A second relapse is used as a surrogate in relapsing-remitting MS, but long follow-up of at least 5 years is necessary to detect all cases. Many studies showed selection bias, partly because of the vague definition of a clinically isolated syndrome. Based on these limitations, sensitivity of magnetic resonance imaging (MRI) criteria was between 35% and 100%, and specificity was between 36% and 92%. Cerebrospinal fluid (CSF) oligoclonal banding showed sensitivities between 69% and 91% with specificities between 59% and 94%. Combination studies of MRI and CSF indicate enhanced sensitivity (56-100%) and specificity (53-96%). Studies on evoked potentials did not justify conclusions about their value. A combination of simplified MRI criteria with CSF might be the best approach for an early MS diagnosis. However, the value of a very early diagnosis stays questionable as patients' benefit of new diagnostic criteria has never been addressed.

15 Review Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement. 2011

Heesen, Christoph / Solari, Alessandra / Giordano, Andrea / Kasper, Jürgen / Köpke, Sascha. ·Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Hamburg, Germany. heesen@uke.uni-hamburg.de ·J Neurol Sci · Pubmed #20920815.

ABSTRACT: For patients with multiple sclerosis (MS) involvement in treatment decisions becomes ever more imperative. Recently new therapeutic options have become available for the treatment of MS and more will be licensed in the near future. Although more efficacious and easier to administer, the new drugs pose increased risks of severe side effects. Also, new diagnostic criteria lead to more and earlier MS diagnoses. Facing increasingly complex decisions, patients need up-to-date evidence-based information and decision support systems in order to make informed decision together with physicians based on their autonomy preferences. This article summarizes recently terminated and ongoing trials on MS patient education and decision aids conducted by the authors' study groups. Programs on relapse management, immunotherapy, and for patients with suspected and early MS have been developed and evaluated in randomized controlled clinical trials. It could be shown that the programs successfully increase knowledge and allow patients to make informed decisions based on their preferences. For the near future, we aim to develop a modular program for all relevant decisions in MS to increase patients' self-management and empower patients to develop their individual approach with the disease. Faced by a disease with many uncertainties, this should enhance patients' sense of control. Still, it remains a challenge to adequately assess decision quality. Therefore, a study in six European and one Australian centers will start soon aiming to establish adequate tools to assess decision-making quality.

16 Clinical Trial A standardised frankincense extract reduces disease activity in relapsing-remitting multiple sclerosis (the SABA phase IIa trial). 2018

Stürner, Klarissa Hanja / Stellmann, Jan-Patrick / Dörr, Jan / Paul, Friedemann / Friede, Tim / Schammler, Sven / Reinhardt, Stefanie / Gellissen, Susanne / Weissflog, Gainet / Faizy, Tobias Djamsched / Werz, Oliver / Fleischer, Sabine / Vaas, Lea A I / Herrmann, Frank / Pless, Ole / Martin, Roland / Heesen, Christoph. ·Institute of Neuroimmunology and Multiple Sclerosis, Center for Molecular Neurobiology Hamburg, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Department of Neurology, Christian-Albrechts-University, Kiel, Germany. · NeuroCure Clinical Research Center, Charité-Universitätsmedizin Berlin and Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany. · Clinical and Experimental Multiple Sclerosis Research Center, Charité-Universitätsmedizin Berlin and Max Delbrück Center for Molecular Medicine, Berlin, Germany. · Department of Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany. · Experimental and Clinical Research Center, Charité-Universitätsmedizin Berlin and Max Delbrück Center for Molecular Medicine, Berlin, Germany. · Department of Medical Statistics, University Medical Center Göttingen, Göttingen, Germany. · Department of Diagnostic and Interventional Neuroradiology, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. · Department of Pharmaceutical and Medicinal Chemistry, Institute of Pharmacy, Friedrich-Schiller-University, Jena, Germany. · Fraunhofer IME Screening Port, Hamburg, Germany. · Evotec AG, Hamburg, Germany. · Neuroimmunology and MS Research Section, Department of Neurology, University Hospital Zürich, Switzerland, Germany. ·J Neurol Neurosurg Psychiatry · Pubmed #29248894.

ABSTRACT: OBJECTIVE: To investigate whether oral administration of a standardised frankincense extract (SFE) is safe and reduces disease activity in patients with relapsing-remitting multiple sclerosis (RRMS). METHODS: We performed an investigator-initiated, bicentric phase IIa, open-label, baseline-to-treatment pilot study with an oral SFE in patients with RRMS (NCT01450124). After a 4-month baseline observation phase, patients were treated for 8 months with an option to extend treatment for up to 36 months. The primary outcome measures were the number and volume of contrast-enhancing lesions (CEL) measured in MRI during the 4-month treatment period compared with the 4-month baseline period. Eighty patients were screened at two centres, 38 patients were included in the trial, 28 completed the 8-month treatment period and 18 of these participated in the extension period. RESULTS: The SFE significantly reduced the median number of monthly CELs from 1.00 (IQR 0.75-3.38) to 0.50 (IQR 0.00-1.13; difference -0.625, 95% CI -1.25 to -0.50; P<0.0001) at months 5-8. We observed significantly less brain atrophy as assessed by parenchymal brain volume change (P=0.0081). Adverse events were generally mild (57.7%) or moderate (38.6%) and comprised mainly gastrointestinal symptoms and minor infections. Mechanistic studies showed a significant increase in regulatory CD4+ T cell markers and a significant decrease in interleukin-17A-producing CD8+ T cells indicating a distinct mechanism of action of the study drug. INTERPRETATION: The oral SFE was safe, tolerated well and exhibited beneficial effects on RRMS disease activity warranting further investigation in a controlled phase IIb or III trial. CLINICAL TRIAL REGISTRATION: NCT01450124; Results.

17 Clinical Trial Disease Activity and Conversion into Multiple Sclerosis after Optic Neuritis Is Treated with Erythropoietin. 2016

Sühs, Kurt-Wolfram / Papanagiotou, Panagiotis / Hein, Katharina / Pul, Refik / Scholz, Kerstin / Heesen, Christoph / Diem, Ricarda. ·Department of Neurology, Medical School Hannover, Carl-Neuberg Str. 1, 30625 Hannover, Germany. Suehs.Kurt-Wolfram@mh-hannover.de. · Department of Neuroradiology, Hospital Bremen Mitte, St. Jürgen Str. 1, 28177 Bremen, Germany. panagiotis.papanagiotou@klinikum-bremen-mitte.de. · Department of Neurology, Georg-August University, Robert-Koch-Str. 40, 37075 Göttingen, Germany. k.hein@uni-goettingen.de. · Department of Neurology, Medical School Hannover, Carl-Neuberg Str. 1, 30625 Hannover, Germany. pul.refik@mh-hannover.de. · Department of Radiology, Lüneburg Hospital, Bögelstr. 1, 21339 Lüneburg, Germany. ke.scholz@asklepios.com. · Department of Neurology, University Hospital Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany. heesen@uke.de. · Department of Neurooncology, University Clinic Heidelberg, Im Neuenheimer Feld 400, 69120 Heidelberg, Germany. ricarda.diem@med.uni-heidelberg.de. ·Int J Mol Sci · Pubmed #27706045.

ABSTRACT: Changes in cerebral lesion load by magnetic resonance imaging (MRI) in patients from a double-blind, placebo-controlled, phase II study on erythropoietin in clinically isolated optic neuritis (ClinicalTrials.gov, NCT00355095) were analyzed. Therefore, patients with acute optic neuritis were assigned to receive either 33,000 IU of recombinant human erythropoietin (IV) daily for three days, or a placebo, as an add-on to methylprednisolone. Of 35 patients, we investigated changes in cerebral lesion load in MRIs obtained at baseline and at weeks 4, 8, and 16. In 5 of the 35 patients, we found conversion into multiple sclerosis (MS) based on MRI progression only. These five patients had received the placebo. Another five patients showed MRI progression together with relapses. Three of these patients had received erythropoietin, and two the placebo. Yet, analyzing the change in absolute numbers of periventricular, juxtacortical, and infratentorial lesions including gadolinium-enhancing lesions, there were no significant differences between the groups. Although effective in terms of retinal nerve fiber layer protection, erythropoietin treatment of acute isolated optic neuritis did not influence further evolution of MRI lesions in the brain when comparing absolute numbers. However, early conversion from clinically isolated syndrome to MS assessed by MRI activity seemed to occur more frequently in the placebo-treated group.

18 Clinical Trial Antigen-specific tolerance by autologous myelin peptide-coupled cells: a phase 1 trial in multiple sclerosis. 2013

Lutterotti, Andreas / Yousef, Sara / Sputtek, Andreas / Stürner, Klarissa H / Stellmann, Jan-Patrick / Breiden, Petra / Reinhardt, Stefanie / Schulze, Christian / Bester, Maxim / Heesen, Christoph / Schippling, Sven / Miller, Stephen D / Sospedra, Mireia / Martin, Roland. ·Institute for Neuroimmunology and Clinical MS Research, Center for Molecular Neurobiology, 20251 Hamburg, Germany. ·Sci Transl Med · Pubmed #23740901.

ABSTRACT: Multiple sclerosis (MS) is a devastating inflammatory disease of the brain and spinal cord that is thought to result from an autoimmune attack directed against antigens in the central nervous system. The aim of this first-in-man trial was to assess the feasibility, safety, and tolerability of a tolerization regimen in MS patients that uses a single infusion of autologous peripheral blood mononuclear cells chemically coupled with seven myelin peptides (MOG1-20, MOG35-55, MBP13-32, MBP83-99, MBP111-129, MBP146-170, and PLP139-154). An open-label, single-center, dose-escalation study was performed in seven relapsing-remitting and two secondary progressive MS patients who were off-treatment for standard therapies. All patients had to show T cell reactivity against at least one of the myelin peptides used in the trial. Neurological, magnetic resonance imaging, laboratory, and immunological examinations were performed to assess the safety, tolerability, and in vivo mechanisms of action of this regimen. Administration of antigen-coupled cells was feasible, had a favorable safety profile, and was well tolerated in MS patients. Patients receiving the higher doses (>1 × 10(9)) of peptide-coupled cells had a decrease in antigen-specific T cell responses after peptide-coupled cell therapy. In summary, this first-in-man clinical trial of autologous peptide-coupled cells in MS patients establishes the feasibility and indicates good tolerability and safety of this therapeutic approach.

19 Clinical Trial Suspected multiple sclerosis - what to do? Evaluation of a patient information leaflet. 2009

Heesen, C / Schäffler, N / Kasper, J / Mühlhauser, I / Köpke, S. ·Institute of Neuroimmunology and Clinical MS Research (inims), University Medical Center Hamburg-Eppendorf, Martinistrasse, Hamburg, Germany. heesen@uke.uni-hamburg.de ·Mult Scler · Pubmed #19625332.

ABSTRACT: BACKGROUND: Parallel to the establishment of early treatments in multiple sclerosis (MS), new diagnostic criteria have made an earlier diagnosis possible. While there is ongoing discussion about possible benign courses and only partial effective treatments, there have been no attempts today to facilitate shared decision making on diagnostic testing between patients with suspected MS and their physicians. OBJECTIVE: This study describes the development and validation process of a leaflet to be presented to people with suspected MS to engage them in a diagnostic decision-making process. METHODS: After a qualitative study showing acceptability among five patients, the leaflet was presented to a retrospective cohort (n = 87 of which 70 replied)) of patients being diagnosed within the last 2 years as well to a prospective cohort of n = 51 patients with symptoms suggestive of MS. RESULTS: Approximately 70% of patients in the prospective as well as in the retrospective cohort wanted to be informed about a possible MS before testing, whereas 10% did not. The leaflet did not seem to elicit anxieties. The attitude to undergo diagnostic testing was not influenced by the leaflet, which can be explained by the nonexperimental design of the study. CONCLUSION: Taken together, our findings demonstrate that early information about possible MS is warranted by patients and does not show negative side effects. Further studies on evidence-based patient information in early MS seem necessary.

20 Clinical Trial Modafinil effects in multiple sclerosis patients with fatigue. 2009

Lange, Rüdiger / Volkmer, Marek / Heesen, Christoph / Liepert, Joachim. ·Neurozentrum, Neurologische Universitatsklinik, Breisacherstr. 64, 79106, Freiburg, Germany. ruediger.lange@uniklinik-freiburg.de ·J Neurol · Pubmed #19367356.

ABSTRACT: BACKGROUND: To investigate the effects of Modafinil on focused attention, motor function and motor excitability in patients with multiple sclerosis (MS) and fatigue. METHODS: 21 MS patients with fatigue were enrolled in this double-blind placebo-controlled study. Modafinil (MOD) or placebo (PL) was administered for 8 weeks. The d2 alertness test, the Nine Hole Peg Test (9HPT) and several transcranial magnetic stimulation (TMS) techniques were applied prior to and after the first drug ingestion and well as after 8 weeks of drug intake. RESULTS: Prior to the first drug intake, the two groups were comparable. After the first drug ingestion, fatigue as measured by the Fatigue Severity Scale (FSS), performance of the d2 test and the 9HPT improved significantly in the MOD group and remained better than in the PL group after 8 weeks of treatment. Patients in the MOD group made fewer mistakes in the D2 test without being slower. They completed the 9HPT faster. Motor evoked potential amplitudes produced by paired pulse TMS were larger in the MOD group than the PL group. Motor thresholds and silent period durations remained unchanged. CONCLUSIONS: Compared to PL, MOD improved fatigue, focused attention and dexterity and enhanced motor cortex excitability in this group of patients. MOD may be helpful in MS patients with fatigue to improve cognitive and motor abilities.

21 Article Emotions towards magnetic resonance imaging in people with multiple sclerosis. 2019

Engels, Katharina / Schiffmann, Insa / Weierstall, Roland / Rahn, Anne Christin / Daubmann, Anne / Pust, Gesa / Chard, Declan / Lukas, Carsten / Scheiderbauer, Jutta / Stellmann, Jan-Patrick / Heesen, Christoph. ·Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany. · Department of Neurology, University Medical Centre Hamburg-Eppendorf (UKE), Hamburg, Germany. · Hamburg Medical School, Hamburg, Germany. · Department of Medical Biometry and Epidemiology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany. · NMR Research Unit, Queen Square Multiple Sclerosis Centre, Department of Neuroinflammation, University College London (UCL) Institute of Neurology, London, UK. · National Institute for Health Research (NIHR), University College London Hospitals (UCLH) Biomedical Research Centre, London, UK. · Department of Neuroradiology, St. Josef-Hospital, Ruhr University, Bochum, Germany. · Trierer Aktionsgruppe (TAG) Multiple Sklerose, Trier, Germany. ·Acta Neurol Scand · Pubmed #30802931.

ABSTRACT: OBJECTIVES: People with multiple sclerosis (pwMS) often have magnetic resonance imaging (MRI) examinations. While MRI can help guide MS management, it may be a source of anxiety for pwMS. We aimed to develop and validate a questionnaire on the "EMotions and Attitudes towards MRI" (MRI-EMA). MATERIAL AND METHODS: The questionnaire was developed, tested in two samples of pwMS and validated in a sample of n = 457 pwMS using exploratory (EFA) and confirmatory factor analysis (CFA). RESULTS: EFA revealed four factors underlying the questionnaire: fear of MRI scan, fear of MRI results, feeling of control over the disease and feeling of competence in the patient-physician encounter. CFA confirmed the model fit. Receiving the MRI results, but not undergoing the procedure was associated with anxiety. Seeing MRI results gave participants a feeling of control over the disease. Only 50% felt competent to discuss MRI findings with their physician. Fear of MRI results was especially high and feeling of competence low in participants with a short disease duration and little MRI experience. CONCLUSION: PwMS do not feel competent when discussing the role, MRI plays in their care. Receiving MRI results caused anxiety and provides some pwMS with a-perhaps false-feeling of control over the disease. The MRI-EMA constitutes a new tool for the assessments of pwMS' feelings towards MRI, that can be applied in future research and clinical settings.

22 Article Benefit evaluation in multiple sclerosis relapse treatment from the patients' perspective - Development and validation of a new questionnaire. 2019

Beckmann, Helen / Augustin, Matthias / Heesen, Christoph / Poettgen, Jana / Blome, Christine. ·German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, Germany. Electronic address: helenbeckmann@gmx.de. · German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, Germany. Electronic address: m.augustin@uke.de. · Institute for Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, Germany. Electronic address: heesen@uke.de. · Institute for Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, Germany. Electronic address: j.poettgen@uke.de. · German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, Germany. Electronic address: c.blome@uke.de. ·Mult Scler Relat Disord · Pubmed #30639826.

ABSTRACT: BACKGROUND: Little is known on how to measure patient-relevant benefit of relapse treatment in relapsing-remitting multiple sclerosis (MS). The objective of this study was to develop and validate a new method for monitoring recovery from MS relapses and patient-relevant treatment benefits. METHODS: A 27-item questionnaire was developed using a multi-step approach comprising open item collection, multidisciplinary expert panel and cognitive debriefing. It was evaluated regarding psychometric properties and feasibility in a longitudinal validation study with 100 patients with MS undergoing relapse treatment. Construct validity was tested by correlations with patient and physician global impressions of change as well as disease-specific and generic health-related quality of life (HRQoL) measures. RESULTS: Results of the feasibility survey indicated high patient acceptance. Reliability was high (Cronbach's α = 0.90). While the Expanded Disability Status Scale (EDSS) was not sensitive to change, Patient Benefit Index for Multiple Sclerosis (PBI-MS) showed a high correlation cross-sectionally with patient global impression of change (PaGIC) (r = 0.60, p < 0.001). Significant moderate to high correlations were found with change in generic HRQoL (r = 0.55-0.61, p < 0.001) and lower correlations with change in disease-specific HRQoL (r = -0.36, p < 0.01). CONCLUSION: The PBI-MS is a reliable and valid instrument for ascertaining patient-relevant benefits of acute relapse treatment; it appears suited for use in routine care and in clinical or health care studies.

23 Article Can we predict cognitive decline after initial diagnosis of multiple sclerosis? Results from the German National early MS cohort (KKNMS). 2019

Johnen, Andreas / Bürkner, Paul-Christian / Landmeyer, Nils C / Ambrosius, Björn / Calabrese, Pasquale / Motte, Jeremias / Hessler, Nicole / Antony, Gisela / König, Inke R / Klotz, Luisa / Hoshi, Muna-Miriam / Aly, Lilian / Groppa, Sergiu / Luessi, Felix / Paul, Friedemann / Tackenberg, Björn / Bergh, Florian Then / Kümpfel, Tania / Tumani, Hayrettin / Stangel, Martin / Weber, Frank / Bayas, Antonios / Wildemann, Brigitte / Heesen, Christoph / Zettl, Uwe K / Zipp, Frauke / Hemmer, Bernhard / Meuth, Sven G / Gold, Ralf / Wiendl, Heinz / Salmen, Anke / Anonymous2401208. ·Department of Neurology, University Hospital Münster, Westfälische-Wilhelms-University Münster, Münster, Germany. a.johnen@uni-muenster.de. · Department of Statistics, Faculty of Psychology, Westfälische-Wilhelms-University, Münster, Germany. · Department of Neurology, University Hospital Münster, Westfälische-Wilhelms-University Münster, Münster, Germany. · Department of Neurology, St. Josef-Hospital, Ruhr-University Bochum, Bochum, Germany. · Department of Neuropsychology and Behavioral Neurology, University of Basel, Basel, Switzerland. · Institute of Medical Biometry and Statistics, University of Lübeck, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany. · Central Information Office (CIO), Philipps-University Marburg, Marburg, Germany. · Department of Neurology, Klinikum rechts der Isar, Technical University of Munich, Munich, Germany. · Munich Cluster for Systems Neurology (SyNergy), Munich, Germany. · Department of Neurology and Focus Program Translational Neuroscience (FTN), Rhine Main Neuroscience Network (rmn2), University Medical Center of the Johannes Gutenberg University Mainz, Mainz, Germany. · NeuroCure Clinical Research Center and Experimental and Clinical Research Center, Charité, University Medicine Berlin and Max Delbrueck Center for Molecular Medicine, Berlin, Germany. · Department of Neurology, Philipps-University Marburg, Marburg, Germany. · Department of Neurology, University of Leipzig, Leipzig, Germany. · Institute of Clinical Neuroimmunology, Ludwig Maximilian University of Munich, Munich, Germany. · Department of Neurology, University of Ulm, Ulm, Germany. · Clinic of Neurology Dietenbronn, Schwendi, Germany. · Department of Neurology, Hannover Medical School, Hannover, Germany. · Neurology, Max-Planck-Institute of Psychiatry, Munich, Germany. · Neurological Clinic, Sana Kliniken des Landkreises Cham, Cham, Germany. · Department of Neurology, Klinikum Augsburg, Augsburg, Germany. · Department of Neurology, University of Heidelberg, Heidelberg, Germany. · Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. · Department of Neurology, Neuroimmunological Section, University of Rostock, Rostock, Germany. · Department of Neurology, Inselspital Bern, Bern University Hospital and University of Bern, Bern, Switzerland. ·J Neurol · Pubmed #30515631.

ABSTRACT: BACKGROUND: Cognitive impairment (CI) affects approximately one-third of the patients with early multiple sclerosis (MS) and clinically isolated syndrome (CIS). Little is known about factors predicting CI and progression after initial diagnosis. METHODS: Neuropsychological screening data from baseline and 1-year follow-up of a prospective multicenter cohort study (NationMS) involving 1123 patients with newly diagnosed MS or CIS were analyzed. Employing linear multilevel models, we investigated whether demographic, clinical and conventional MRI markers at baseline were predictive for CI and longitudinal cognitive changes. RESULTS: At baseline, 22% of patients had CI (impairment in ≥2 cognitive domains) with highest frequencies and severity in processing speed and executive functions. Demographics (fewer years of academic education, higher age, male sex), clinical (EDSS, depressive symptoms) but no conventional MRI characteristics were linked to baseline CI. At follow-up, only 14% of patients showed CI suggesting effects of retesting. Neither baseline characteristics nor initiation of treatment between baseline and follow-up was able to predict cognitive changes within the follow-up period of 1 year. CONCLUSIONS: Identification of risk factors for short-term cognitive change in newly diagnosed MS or CIS is insufficient using only demographic, clinical and conventional MRI data. Change-sensitive, re-test reliable cognitive tests and more sophisticated predictors need to be employed in future clinical trials and cohort studies of early-stage MS to improve prediction.

24 Article Magnetic resonance imaging as a prognostic disability marker in clinically isolated syndrome: A systematic review. 2019

Rahn, Anne C / Köpke, Sascha / Stellmann, Jan-Patrick / Schiffmann, Insa / Lukas, Carsten / Chard, Declan / Heesen, Christoph. ·Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. · Nursing Research Unit, University of Lübeck, Lübeck, Germany. · Department of Radiology, St. Josef Hospital Bochum, Ruhr University, Bochum, Germany. · NMR Research Unit, Queen Square Multiple Sclerosis Centre, University College London (UCL), Institute of Neurology, London, UK. · National Institute for Health Research (NIHR), University College London Hospitals (UCLH), Biomedical Research Centre, London, UK. · Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. ·Acta Neurol Scand · Pubmed #30091223.

ABSTRACT: Magnetic resonance imaging (MRI) is the key prognostic tool in people with a clinically isolated syndrome (CIS). There is increasing interest in treating people following a CIS in the hope that conversion to multiple sclerosis (MS) will be prevented and future disability reduced. So far, the prognostic value of MRI for disability following a CIS has not been evaluated systematically. We systematically searched MEDLINE and EMBASE. Cohort studies were selected if they reported associations of MRI and disability following a CIS, included at least 50 people with a CIS at baseline, had at least 5 years of follow-up and obtained at least one structural MRI measurement (T1 lesions, T2 lesions, T1 contrast-enhancing lesions or brain atrophy). We assessed the studies for quality and rated the completeness of MRI reporting. In total, 13 studies were identified reporting on the following: T2 lesion number and volume, T2 infratentorial lesion number and volume, T1 contrast-enhancing lesions and grey matter fraction. T2 brain lesion number determined soon after the occurrence of a CIS was associated with disability progression after 5-7 years, with an increased risk when 10 or more lesions were present. Infratentorial lesions were also associated with a higher risk of subsequent disability. The number and distribution of MRI-visible lesions soon after a CIS are associated with disability later on, and may offer additional useful information when making treatment decisions in people with early MS. Further work is required to determine whether other measures have a higher predictive potential.

25 Article Risk knowledge of people with relapsing-remitting multiple sclerosis - Results of an international survey. 2018

Giordano, Andrea / Liethmann, Katrin / Köpke, Sascha / Poettgen, Jana / Rahn, Anne Christin / Drulovic, Jelena / Beckmann, Yesim / Sastre-Garriga, Jaume / Galea, Ian / Heerings, Marco / Jongen, Peter Joseph / Vettorazzi, Eik / Solari, Alessandra / Heesen, Christoph / Anonymous3131138. ·Service of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. · Department of Psychology, University of Turin, Turin, Italy. · Institut für Neuroimmunologie und Multiple Sklerose, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. · Unit of Health Sciences and Education, Faculty of Mathematics, Informatics and Natural Sciences, University of Hamburg, Hamburg, Germany. · Pediatrics and Medical Psychology, University Medical Center Schleswig-Holstein, Campus Kiel, Kiel, Germany. · Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany. · Department of Neurology, University Medical Center Eppendorf, Hamburg, Germany. · Institute of Neurology, Clinical Center of Serbia, University of Belgrade, Belgrade, Serbia. · Department of Neurology, Faculty of Medicine, Ataturk Training and Research Hospital, Izmir, Turkey. · Multiple Sclerosis Centre of Catalonia (Cemcat), Neurology-Neuroimmunology Department, Vall d'Hebron University Hospital, Universitat Autònoma de Barcelona, Barcelona, Spain. · Clinical Neurosciences, Clinical & Experimental Sciences, Faculty of Medicine, University of Southampton, United Kingdom. · National MS Foundation of the Netherlands, Rotterdam, The Netherlands. · Department of Community & Occupational Medicine, University Medical Centre Groningen, Groningen, The Netherlands. · MS4 Research Institute, Nijmegen, The Netherlands. · Institut für Medizinische Biometrie und Epidemiologie, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. ·PLoS One · Pubmed #30496233.

ABSTRACT: BACKGROUND: Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany. OBJECTIVE: We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge. METHODS: An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age ≥18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug. RESULTS: Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18-67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p < 0.001). Variables significantly associated with higher risk knowledge were higher education (p < 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p < 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (p = 0.001). CONCLUSION: MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.

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