Laura Barin1, Anke Salmen2, Giulio Disanto3, Haris Babačić4, Pasquale Calabrese5, Andrew Chan6, Christian P Kamm7, Jürg Kesselring8, Jens Kuhle9, Claudio Gobbi10, Caroline Pot11, Milo A Puhan12, Viktor von Wyl13. 1. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: laura.barin@uzh.ch. 2. Department of Neurology, University Hospital Bern and University of Bern, Bern, Switzerland. Electronic address: anke.salmen@insel.ch. 3. Neurocenter of southern Switzerland, Ospedale regionale di Lugano, Lugano, Switzerland; Neurologic Clinic and Policlinic, Departments of Medicine, Biomedicine and Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland. Electronic address: iulio.disanto@eoc.ch. 4. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. 5. Neuropsychology and Behavioral Neurology Unit, Division of Molecular and Cognitive Neuroscience, Department of Psychology, University of Basel, Basel, Switzerland. Electronic address: pasquale.calabrese@unibas.ch. 6. Department of Neurology, University Hospital Bern and University of Bern, Bern, Switzerland. Electronic address: andrew.chan@insel.ch. 7. Department of Neurology, University Hospital Bern and University of Bern, Bern, Switzerland; Neurology and Neurorehabilitation Centre, Luzerner Kantonsspital, Lucerne, Switzerland. Electronic address: christian.kamm@luks.ch. 8. Department of Neurology & Neurorehabilitation, Rehabilitation Centre Kliniken Valens, Valens, Switzerland. Electronic address: juerg.kesselring@kliniken-valens.ch. 9. Neurologic Clinic and Policlinic, Departments of Medicine, Biomedicine and Clinical Research, University Hospital Basel, University of Basel, Basel, Switzerland. Electronic address: jens.kuhle@usb.ch. 10. Neurocenter of southern Switzerland, Ospedale regionale di Lugano, Lugano, Switzerland. Electronic address: claudio.gobbi@eoc.ch. 11. Laboratories of Neuroimmunology, Division of Neurology and Neuroscience Research Center, Department of Clinical Neurosciences, Lausanne University Hospital, Lausanne, Switzerland. Electronic address: Caroline.Pot-Kreis@chuv.ch. 12. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: miloalan.puhan@uzh.ch. 13. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: viktor.vonwyl@uzh.ch.
Abstract
BACKGROUND: MS symptoms affect many functional domains. Knowing the specific impact of symptoms on health-related quality of life (HRQoL) is vital for successful disease and symptom management in MS. We aimed at investigating how specific MS symptoms contribute to the disease burden in individuals and from a population perspective. METHODS: We included 855 Swiss Multiple Sclerosis Registry participants with a relapsing-remitting form (RRMS) or a progressive form (PMS). HRQoL was measured with the EuroQol 5-Dimension EQ-5D-index and EQ-Visual Analogue Scale (EQ-VAS) on 0-100% scales. Their associations with 20 symptoms, socio-demographic and clinical information were explored in median regression models, stratified by RRMS and PMS. RESULTS: We included 611 participants with RRMS and 244 with PMS. In RRMS, gait (-6.5%) and balance problems (-5.1%) had the largest EQ-5D-index reductions, and were also important at the population level (frequencies 45% and 52%). Fatigue, depression, and spasticity (frequencies 74.1%, 31%, 38%) also contributed to the population disease burden. In PMS, spasticity, paralysis, and bowel problems had the largest impact on EQ-5D-index, both at the individual and population levels. The largest impact on EQ-VAS at population level was associated in RRMS with balance problems, depression, dizziness, and spasticity, while in PMS with weakness, pain, and paralysis. CONCLUSIONS: While HRQoL at population level is most affected by balance problems, spasticity, and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity, paralysis, weakness, and pain. Many symptoms with the largest effects in individuals substantially contribute to the population disease burden.
BACKGROUND: MS symptoms affect many functional domains. Knowing the specific impact of symptoms on health-related quality of life (HRQoL) is vital for successful disease and symptom management in MS. We aimed at investigating how specific MS symptoms contribute to the disease burden in individuals and from a population perspective. METHODS: We included 855 Swiss Multiple Sclerosis Registry participants with a relapsing-remitting form (RRMS) or a progressive form (PMS). HRQoL was measured with the EuroQol 5-Dimension EQ-5D-index and EQ-Visual Analogue Scale (EQ-VAS) on 0-100% scales. Their associations with 20 symptoms, socio-demographic and clinical information were explored in median regression models, stratified by RRMS and PMS. RESULTS: We included 611 participants with RRMS and 244 with PMS. In RRMS, gait (-6.5%) and balance problems (-5.1%) had the largest EQ-5D-index reductions, and were also important at the population level (frequencies 45% and 52%). Fatigue, depression, and spasticity (frequencies 74.1%, 31%, 38%) also contributed to the population disease burden. In PMS, spasticity, paralysis, and bowel problems had the largest impact on EQ-5D-index, both at the individual and population levels. The largest impact on EQ-VAS at population level was associated in RRMS with balance problems, depression, dizziness, and spasticity, while in PMS with weakness, pain, and paralysis. CONCLUSIONS: While HRQoL at population level is most affected by balance problems, spasticity, and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity, paralysis, weakness, and pain. Many symptoms with the largest effects in individuals substantially contribute to the population disease burden.
Authors: Christian Philipp Kamm; L Barin; C Gobbi; C Pot; P Calabrese; A Salmen; L Achtnichts; J Kesselring; M A Puhan; V von Wyl Journal: J Neurol Date: 2019-10-08 Impact factor: 4.849
Authors: Chloé Sieber; Deborah Chiavi; Christina Haag; Marco Kaufmann; Andrea B Horn; Holger Dressel; Chiara Zecca; Pasquale Calabrese; Caroline Pot; Christian Philipp Kamm; Viktor von Wyl Journal: JMIR Mhealth Uhealth Date: 2022-10-05 Impact factor: 4.947
Authors: Laura Barin; Christian P Kamm; Anke Salmen; Holger Dressel; Pasquale Calabrese; Caroline Pot; Sven Schippling; Claudio Gobbi; Stefanie Müller; Andrew Chan; Stephanie Rodgers; Marco Kaufmann; Vladeta Ajdacic-Gross; Nina Steinemann; Jürg Kesselring; Milo A Puhan; Viktor von Wyl Journal: Mult Scler Date: 2019-01-18 Impact factor: 6.312
Authors: Marco Kaufmann; Milo Alan Puhan; Anke Salmen; Christian P Kamm; Zina-Mary Manjaly; Pasquale Calabrese; Sven Schippling; Stefanie Müller; Jens Kuhle; Caroline Pot; Claudio Gobbi; Nina Steinemann; Viktor von Wyl Journal: Front Neurol Date: 2020-03-06 Impact factor: 4.003
Authors: Duncan R Babbage; Kirsten van Kessel; Juliet Drown; Sarah Thomas; Ann Sezier; Peter Thomas; Paula Kersten Journal: Internet Interv Date: 2019-11-09