The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?

Barin, Laura; Salmen, Anke; Disanto, Giulio; Babačić, Haris; Calabrese, Pasquale; Chan, Andrew; Kamm, Christian P.; Kesselring, Jürg; Kuhle, Jens; Gobbi, Claudio; Pot, Caroline; Puhan, Milo A.; Wyl, Viktor von

doi:10.1016/j.msard.2018.07.013

Cited by 113 publications

(88 citation statements)

References 33 publications

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“…Zudem zeigt, in den berechneten Regressionsanalysen, der Erwerbsstatus einen Einfluss auf die HQRoL. Für weitere [20][21][22][23]. Diese drei wichtigsten Prädiktoren unserer Untersuchung zählen alle zu den sogenannten "versteckten Symptomen".…”

Section: Diskussionunclassified

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

Sander

Kügler

Elsner

2020

Fortschr Neurol Psychiatr

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Zusammenfassung Hintergrund Multiple Sklerose (MS) ist eine chronisch progredient verlaufende Erkrankung, welche mit einer Vielzahl von MS-spezifischen Symptomen einhergeht. Viele dieser Symptome wirken sich negativ auf die gesundheitsbezogene Lebensqualität (Health Related Quality of Life, HRQoL) der Betroffenen aus. Bisher ungeklärt ist, welche MS-spezifischen Symptome einen besonders großen Einfluss auf die HRQoL haben. Methodik Die durchgeführte Untersuchung basiert auf den Daten einer Mitgliederbefragung der Deutschen MS Gesellschaft (DMSG) im Jahr 2015 (n = 424). Unter Berücksichtigung von soziodemographischen Variablen und allgemeinen medizinischen Variablen wurde der Einfluss der MS-spezifischen Symptome auf die HRQoL untersucht. Die HRQoL wurde mit dem Multiple Sclerosis Quality of Life-54-Instrument (MSQOL-54-Instrument) erhoben. In einem Vortest wurden alle Einflussfaktoren auf einen signifikanten Mittelwertunterschied (p = 0,05) bzw. eine mittlere Korrelation (Pearson’s r ≥ 0,3) getestet. Anschließend wurde der Einfluss der im Vortest identifizierten Variablen auf die HRQoL mithilfe der multiplen linearen Regressionsanalyse untersucht. Ergebnisse Für die Befragten konnte ein durchschnittlicher Physical Health Composite Score (PHCS) von 48,3 (sd = 17,7) und ein durchschnittlicher Mental Health Composite Score von 56,0 (sd = 20,1) errechnet werden. Als wichtigste Einflussfaktoren auf die HRQoL ergeben sich die MS-spezifischen Symptome Depression, Schmerz und kognitive Einschränkungen. MS-bedingte Symptome mit einem Mobilitätskontext zeigen negativen Zusammenhang mit dem PHCS. Sprechstörung und Schwindel sind mit einem abnehmenden MHCS verbunden. Der Beschäftigungsstatus ist der einzige sozioökonomische Faktor, der sich in der multiplen Regression signifikant auf die HRQoL auswirkt. Die allgemeinen medizinischen Faktoren zeigen keinen signifikanten Einfluss auf die HRQoL. Schlussfolgerung MS-spezifische Symptome haben einen großen Einfluss auf die HRQoL von Menschen mit MS. In der Untersuchung konnte gezeigt werden, dass besonders die sogenannten „versteckten Symptome“ einen wesentlichen Einfluss auf die HRQoL haben. Hier sind beispielsweise die Symptome Depression, Schmerz und kognitive Einschränkungen zu nennen. Diese sollten stärker in der Versorgung von Menschen mit MS berücksichtigt werden.

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Section: Diskussionunclassified

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

Sander

Kügler

Elsner

2020

Fortschr Neurol Psychiatr

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“…The EDSS-based disease stage categorization inherits the limitations of being mainly gait-focused and somewhat subjective in certain areas (e.g., sensory function, bowel, and bladder function). As a consequence, symptoms like fatigue, cognitive disturbances, and depression are not well-reflected in this categorization, although they are frequent and highly influential on quality of life on an individual level (14). This shortcoming can be seen in the wide ranges of the disability weights within EDSS-based disease severity subgroups, particularly in the sensitivity analysis based on utility data from the SMSR.…”

Section: Discussionmentioning

confidence: 99%

“…Together with the generally higher utility, their impact on the population burden is likely to be small as well. Next, the use of an EDSS-proxy instead of a clinically assessed EDSS is expected to only marginally affect the estimates because categorizations and not exact EDSS values are used and a previous study showed a good accuracy of the EDSS-proxy (14). Another source of uncertainty concerns the mortality within the context of MS since the details of mortality recording vary substantially in different mortality registries.…”

Section: Discussionmentioning

confidence: 99%

“…Specifically, we worked with 17 age groups (18-19, 20-24,..., 90-94, and 95 and older), two sex groups (female and male) and four disease severity groups [asymptomatic (EDSS-proxy 0), mild (EDSS-proxy >0-3.5), moderate (EDSS-proxy 4-6.5), severe (EDSS-proxy 7-9.5)]. The EDSS-proxy values were estimated based on an algorithm by Barin et al which uses self-reported mobility data (14). Furthermore, we added an asymptomatic category based on no mobility impairment and no problems in any of the five domains of the EQ-5D.…”

Section: Estimation Of Disability-adjusted Life Years (Dalys)mentioning

confidence: 99%

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60/30: 60% of the Morbidity-Associated Multiple Sclerosis Disease Burden Comes From the 30% of Persons With Higher Impairments

et al. 2020

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Background: Multiple sclerosis (MS) is the most common chronic, non-traumatic, neurologic disease in young adults. While approximate values of the disease burden of MS are known, individual drivers are unknown. Objective: To estimate the age-, sex-, and disease severity-specific contributions to the disease burden of MS. Methods: We estimated the disease burden of MS using disability-adjusted life years (DALYs) following the Global Burden of Disease study (GBD) methodology. The data sources consisted of the Swiss MS Registry, a recent prevalence estimation, and the Swiss mortality registry. Conclusions: Morbidity has a larger influence on the disease burden of MS than mortality and is shared in a ratio of 2:3 between persons in an asymptomatic/mild and moderate/severe disease stage in Switzerland. Interventions to reduce severity worsening in combination with tailored, symptomatic treatments are important future paths to lower the disease burden of MS.

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“…It has been estimated that the average disease duration from diagnosis to use of a permanent walking aid is ~13 years ( 8 ). In fact, these motor problems have recently been identified by MS patients as the symptoms most undermining their health-related quality of life (HRQoL) ( 9 ).…”

Section: Introductionmentioning

confidence: 99%

A Pilot Study to Explore Patient Satisfaction With a Virtual Rehabilitation Program in Multiple Sclerosis: The RehabVR Study Protocol

Meca-Lallana

Prefasi

Alabarcez³

et al. 2020

Front. Neurol.

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Background: Virtual reality (VR) has emerged as a promising treatment approach in rehabilitation for patients with multiple sclerosis (MS) due to its potential to increase patient motivation and rehabilitation adherence. One of the key features for rehabilitation adherence is patient satisfaction with the VR rehabilitation (VRR) program, and information on user satisfaction and not only effectiveness is required to systematically include VRR in routine clinical practice. Given that information on patient satisfaction with VRR is scarce, the primary objective of this study is to assess long-term patient satisfaction with a novel VRR program. This program has been specifically designed for MS patients by a multidisciplinary team of specialists, based on an effective conventional rehabilitation (CR) program. Secondarily, discomfort with VRR will be evaluated, and therapy adherence and changes in a variety of domains typically affected by MS will be compared between patients receiving VRR and patients receiving CR. Methods: In this prospective single-center 6-months follow-up study, 32 and 16 MS patients will receive VRR or CR, respectively. Patients will attend twice weekly rehabilitation sessions on site during 4 weeks, and they will continue with rehabilitation at home for five additional months. Satisfaction, assessed by the User Satisfaction Evaluation Questionnaire (USEQ), at 6 months of the VRR program initiation will be the primary outcome. Secondary outcomes include adherence, disability, spasms and spasticity, balance, fatigue, activities of daily living (ADLs), depression, anxiety, work status, cognition, demographic, and clinical characteristics (in the VRR and CR groups), and discomfort (in the VRR group). Outcome measures will be assessed at baseline, and at 1 and 6 months of rehabilitation initiation. Discussion: The study is intended to provide a better understanding of long-term patient satisfaction with a VRR program specifically designed for MS patients. Additionally, the study will provide information on long-term adherence, changes in motor symptoms, cognitive functions and patient-reported outcomes after the rehabilitation program. The results from this study will help to gather valuable knowledge on the use of rehabilitation with a new VR tool in MS patients.

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The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?

Cited by 113 publications

References 33 publications

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

60/30: 60% of the Morbidity-Associated Multiple Sclerosis Disease Burden Comes From the 30% of Persons With Higher Impairments

A Pilot Study to Explore Patient Satisfaction With a Virtual Rehabilitation Program in Multiple Sclerosis: The RehabVR Study Protocol

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