Socioeconomic impact of depression and pain in patients with neuromyelitis optica spectrum disorders

Daria Tkachenko(Medizinische Hochschule Hannover), Ilya Ayzenberg(St. Josef-Hospital), Louisa M. Schöppe(Medizinische Hochschule Hannover), Rasmus Schülke(Medizinische Hochschule Hannover), Friedemann Paul(Humboldt-Universität zu Berlin), Ankelien Duchow(Humboldt-Universität zu Berlin), Judith Bellmann-Strobl(Humboldt-Universität zu Berlin), Nadja Siebert(Humboldt-Universität zu Berlin), Tania Kümpfel(Ludwig-Maximilians-Universität München), Joachim Havla(Ludwig-Maximilians-Universität München), Hannah Pellkofer(Universitätsmedizin Göttingen), Sven Jarius(Heidelberg University), Brigitte Wildemann(Heidelberg University), Achim Berthele(Technical University of Munich), Luisa Klotz(University of Münster), Marc Pawlitzki(Düsseldorf University Hospital), Stefan Gingele(Medizinische Hochschule Hannover), Olivia Schreiber‐Katz(Medizinische Hochschule Hannover), Martin S. Weber(Fraunhofer Institute for Translational Medicine and Pharmacology), Makbule Senel(Universität Ulm), Jan-Patrick Stellmann(Centre National de la Recherche Scientifique), Vivien Häußler(Universität Hamburg), Orhan Aktas(Düsseldorf University Hospital), Marius Ringelstein(Düsseldorf University Hospital), Kerstin Hellwig(St. Josef-Hospital), Carolin Schwake(St. Josef-Hospital), Ingo Kleiter(St. Josef-Hospital), Corinna Trebst(Medizinische Hochschule Hannover), Martin W. Hümmert(Medizinische Hochschule Hannover), the Neuromyelitis Optica Study Group (NEMOS)§, Philipp Albrecht, Klemens Angstwurm, Susanna Asseyer, Antonios Bayas, Natalie Bednarz, Stefanie Behnke, Stefan Bittner, Franziska Bütow, Mathias Buttmann, Eva Dawin, Rick Dersch, Daniel Engels, Thorleif Etgen, Carsten Finke, Katinka Fischer, Moritz Förster, Mathias Fousse, Benedikt Frank, Frank Freitag, Anna Gahlen, Achim Gass, Johannes Gehrig, Christian Geis, Katrin Giglhuber, Yasemin Goereci, Ralf Gold, Ana Beatriz Ayrosa Galvao Ribeiro Gomes, Jonas Graf, Sergiu Groppa, Julia Gutbrod, Kerstin Guthke, Axel Haarmann, Maria Hastermann, Bernhard Hemmer, Mariella Herfurth, Marina Herwerth, Frank Hoffmann, Olaf Hoffmann, Ulrich Hofstadt‐van Oy, Leila Husseini, Kathleen Ingenhoven, Jutta Junghans, Matthias Kaste, Karsten Kern, Peter Kern, Pawel Kermer, Christoph Kleinschnitz, Wolfgang Köhler, Kimberly Körbel, Markus Kowarik, Markus Krämer, Markus Krumbholz, Julian Reza Kretschmer, Volker Kunzmann, Natalia Kurka, Theodoros Ladopoulos, Andrea Landwehr, Stefan Langel, Ann Sophie Lauenstein, Sarah Laurent, Frank Leypoldt, De-Hyung Lee, Dominik Lehrieder, Martin Liebetrau, Gero Lindenblatt, Ralf Linker, Lisa Lohmann, Felix Lüssi, Peter Lüdemann, Michelle Maiworm, Martin Marziniak, Christoph Mayer, Stefanie Meister, Arthur Melms, Mathias Mering, Imke Metz, Sven Meuth, Jasmin Naumann, Marjan Nenkov, Oliver Neuhaus, Tradite Neziraj, Moritz Niederschweiberer, Sabine Niehaus, Frederike Cosima Oertel, Carolin Otto, Florence Pache, Thivya Pakeerathan, Sandra Paryjas, Sulyn Pepping, Mosche Pompsch, Roxanne Alice Pretzsch, Anne‐Katrin Proebstel, Maria Protopapa, Hans-Ulrich Puhlmann, Refik Pul, Sebastian Rauer, Torsten Rehfeldt, Nele Retzlaff, Arne Riedlinger, Paulus Rommer, Kevin Rostásy, Veith Rothhammer, Lioba Rückriem, Klemens Ruprecht, Christoph Ruschil, Carina Saggau, Patrick Schindler, Muriel Schraad, Matthias Schwab, Patricia Schwarz, Maria Seipelt, Jörn Peter Sieb, Gilberto Soloroza, Claudia Sommer, Alexander Stefanou, A. Steinbrecher, Heike Stephanik, Verena Steuerwald, Muriel Stoppe, Klarissa Stürner, Marie Süße, Florian Then Bergh, Athanasios Tarampanis, Simone Tauber, Thanos Tsaktanis, Hayrrettin Tumani, Ulrike Wallwitz, Clemens Warnke, Klaus-Peter Wandinger, Jens Weise, Jonathan Wickel, Heinz Wiendl, Alexander Winkelmann, Felix Wohlrab, Yavor Yalachkov, Clarissa Zappe, Uwe Zettl, Ulf Ziemann, Frauke Zipp
Neurological Research and Practice
May 4, 2026
Cited by 0Open Access
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Abstract

BACKGROUND: Neuromyelitis optica spectrum disorders (NMOSD) are associated with a high burden of depression, pain, and physical disability, all of which significantly impair quality of life. At the same time, discussions on the cost-effectiveness of treatment strategies are gaining importance. However, it is not yet known whether specific symptom burdens are particularly cost-driving. This study aims to provide a comprehensive cost analysis considering depression and pain to optimise future healthcare strategies. METHODS: This prospective cross-sectional multicentre study was conducted at twelve centres of the Neuromyelitis Optica Study Group (NEMOS). Over a three-year period, 115 NMOSD patients were recruited. Disease-related costs, pain, and depression were assessed using standardised questionnaires. A generalised linear model analysis and graphical sub-cost analysis were performed to identify key cost drivers. The robustness of our findings was confirmed using two independent depression rating scales. RESULTS: In our sample of 115 patients, 77% suffered from chronic pain with a median pain intensity of 4.0 on the numeric rating scale (NRS). Moreover, 56% of patients reported depressive symptoms. In multivariate regression analysis, depression emerged as a significant predictor of total costs (p < 0.001) alongside the EDSS score (p < 0.001) and age (p = 0.004). In contrast, pain was not significantly influencing total costs (p = 0.057), despite being reported by the majority of patients. Graphical analyses highlighted informal costs as the main cost driver in patients with increasing depressive symptoms. CONCLUSIONS: Depressive symptoms are not only common in NMOSD patients but also represent a major cost driver alongside neurological disability. Addressing these symptoms is essential for optimal patient care and may help reduce the socioeconomic burden.


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