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Pain syndromes in NMOSD - results of a nationwide multicenter study in Germany using the Neuromyelitis Optica Study Group registry
Author(s): ,
I. Ayzenberg
Affiliations:
Neurology, Ruhr-University Bochum / St. Josef Hospital, Bochum
,
E. Henke
Affiliations:
Neurology, Ruhr-University Bochum / St. Josef Hospital, Bochum
,
S. Asseyer
Affiliations:
Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, NeuroCure Clinical Research Center, Berlin
,
A. Brandt
Affiliations:
Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, NeuroCure Clinical Research Center, Berlin
,
P. Paul
Affiliations:
Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, NeuroCure Clinical Research Center, Berlin
,
T. Kümpfel
Affiliations:
Institute of Clinical Neuroimmunology, University Hospital and Biomedical Center, Ludwig-Maximilians University Munich, Munich
,
M. Schlüter
Affiliations:
Institute of Clinical Neuroimmunology, University Hospital and Biomedical Center, Ludwig-Maximilians University Munich, Munich
,
M. Ringelstein
Affiliations:
Neurology, Heinrich-Heine University Düsseldorf, Düsseldorf
,
O. Aktas
Affiliations:
Neurology, Heinrich-Heine University Düsseldorf, Düsseldorf
,
C. Trebst
Affiliations:
Neurology, Hannover Medical School, Hannover
,
M.W. Hümmert
Affiliations:
Neurology, Hannover Medical School, Hannover
,
B. Kaulen
Affiliations:
Multiple Sklerose Tagesklinik und Ambulanz, Universitätsklinikum Eppendorf, Hamburg
,
J.-P. Stellmann
Affiliations:
Multiple Sklerose Tagesklinik und Ambulanz, Universitätsklinikum Eppendorf, Hamburg
,
S. Jarius
Affiliations:
Neurology, University of Heidelberg, Heidelberg
,
B. Wildemann
Affiliations:
Neurology, University of Heidelberg, Heidelberg
,
M. Senel
Affiliations:
Neurology, University of Ulm, Ulm
,
H. Pellkofer
Affiliations:
Institute of Clinical Neuroimmunology, University Hospital and Biomedical Center, Ludwig-Maximilians University Munich, Munich; Neurology, University of Göttingen, Göttingen
,
M. Weber
Affiliations:
Neurology, University of Göttingen, Göttingen
,
M. Pawlitzki
Affiliations:
Neurology, University of Magdeburg, Magdeburg
,
R. Berger
Affiliations:
Neurology, Asklepios Clinic Altona, Hamburg
,
A. Gahlen
Affiliations:
Neurology, Ruhr-University Bochum / St. Josef Hospital, Bochum
I. Kleiter
Affiliations:
Neurology, Ruhr-University Bochum / St. Josef Hospital, Bochum; Marianne-Strauß-Klinik, Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke, Berg, Germany
ECTRIMS Online Library. Ayzenberg I. Oct 12, 2018; 228888
Ilya Ayzenberg
Ilya Ayzenberg
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Abstract: P1047

Type: Poster Sessions

Abstract Category: Clinical aspects of MS - Comorbidity

Introduction: Pain is one of the most disabling symptoms in Neuromyelitis optica spectrum disorders (NMOSD), however until now there is a lack of comprehensive large-scale studies.
Objective: To evaluate prevalence, clinical features and management of pain syndromes in NMOSD as well as their effects on the activities of daily living (ADL) and quality of life (QoL) in a nationwide study in Germany.
Methods: All NMOSD patients of 12 academic centres were contacted. Detailed characterisation of pain syndromes, depression and QoL was assessed with McGill, PainDetect, Brief Pain Inventory, Beck Depression Inventory (BDI) and SF-36 questionnaires. Effects of symptomatic and immune therapies were evaluated retrospectively.
Results: 151 of 186 (81%) patients responded: 82.6% female, mean age 47.6±13.8 years, 81.5% seropositive: 105× aquaporin-4(AQP4)-abs, 18× myelin oligodendrocyte glycoprotein(MOG)-abs. Overall pain prevalence was high (77.3%) and not associated with serological status. 41% of patients reported episodic and 59% chronic pain. The mean pain intensity was moderate (3.6±2.1, scale 0-10) with most typical pain localisation in legs (71%), spine (68%) and arms (48%). 2/3 of pain sufferers described neuropathic pain, but only 60% of them took specific medications, mostly with just a moderate effect (mean pain reduction of 50%; mean pain intensity in those under therapy 4.2±2.4). Painful tonic spasms were more prevalent in patients with AQP4-abs (43.1% vs. 23.8%, p< 0.05). Surprisingly, only 25.7% of them took antispastic medication. Mild to moderate pain reduction was reported by 55% of patients after start of tocilizumab, 38% under rituximab, 33% under azathioprine, retrospectively. Pain caused a substantial ADL-reduction (4.1±2.0, scale 0-10) and decrease of the health-related QoL (33.6 vs. 47.3 p< 0.05). The BDI-score was decreased in 41% of NMOSD-patients (BDI>13), with moderate or severe depression in 18% (BDI>20). The BDI-score was significantly higher in chronic compared to episodic pain sufferers (15.4±9.8 vs. 10.5±8.5, p< 0.05).
Conclusions:
1. Pain syndromes are highly prevalent, debilitating and often undertreated in NMOSD patients in Germany.
2. Recognition of an individual pain pattern, neuropathic or chronic (the latter in association with depression) in every second, and painful tonic spasms in every third patient, are crucial for adequate symptomatic treatment.
3. Adequate immune therapy can support pain relief.
Disclosure: The study has been supported by a grant from Chugai Pharma.
I. Ayzenberg received speaker honoraria from Roche, travel grants from Biogen and research funding from Chugai Pharma. E.Henke: nothing to disclose.S. Asseyer: nothing to disclose.A. Brandt: nothing to discloseF. Paul has no conflicts of interest related to the study.T. Kümpfel has received travel expenses and speaker honoraria from Bayer Healthcare, Teva Pharma, Merck, Novartis Pharma, Sanofi-Aventis/Genzyme, CLS Behring, Roche Pharma and Biogen as well as grant support from Bayer-Schering AG, Novartis and Chugai Pharma.M. Schlüter: nothing to disclose.M. Ringelstein received speaker honoraria from Novartis, Bayer Vital GmbH and Ipsen and travel reimbursement from Bayer Schering, Biogen Idec, Merz, Genzyme, Teva and Merck, none related to this study.O. Aktas has no conflicts of interest related to the study.C. Trebst has received honoraria for consultation and expert testimony from Biogen Idec/GmbH, Genzyme GmbH and Novartis Pharmaceuticals. None of this interfered with the current report.M.W. Hummer: nothing to disclose.B. Kaulen: nothing to disclose.JP Stellmann receives research funding from Deutsche Forschungsgemeinschaft and reports grants from Biogen and Genzyme outside the submitted work.S. Jarius: nothing to disclose.B. Wildemann has no conflicts of interest related to the study.M. Senel has received honoraria for speaking and/or travel grants from Bayer, TEVA and Biogen and research funding from the Hertha-Nathorff-Program, none related to this study.H. Pellkofer has no conflicts of interest related to the study.M.S. Weber receives research support from the Deutsche Forschungsgemeinschaft (DFG; WE 3547/5-1), from Novartis, TEVA, Biogen-Idec, Roche, Merck and the ProFutura Programm of the Universitätsmedizin Göttingen; he received travel funding and/or speaker honoraria from Biogen-Idec, Merck Serono, Novartis, Roche, TEVA, Bayer and Genzyme.M.Pawlitzki received speaker honoraria from Roche, Genzyme and Novartis and travel/accommodation/meeting expenses from Novartis, Biogen Idec, Genzyme and MERCK Serono.A.Gahlen received travel reimbursment from Sanofi Genzyme.R. Berger: nothing to disclose.I. Kleiter has received travel expenses and speaker honoraria from Bayer Health Care, Biogen Idec, Chugai, Merck, Novartis, Shire, and Roche and grant support from Chugai and Diamed.

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