scholarly journals Beurteilung der beruflichen Leistungsfähigkeit bei Multipler Sklerose – eine prospektive Studie zur Entwicklung und Evaluation eines symptomspezifischen Assessment-Instrumentariums

2021 ◽  
Vol 27 (01) ◽  
pp. 37-48
Author(s):  
P. Flachenecker ◽  
C. Sterz ◽  
K. Gusowski ◽  
H. Meißner
Keyword(s):  
Multiple Sclerosis ◽  
Regression Analysis ◽  
Multiple Sklerose ◽  
Symptom Burden ◽  
Study Patient ◽  
Schlüsselwörter Multiple Sklerose ◽  
Assessment Instruments ◽  
Sum Scores ◽  
Balance Problems ◽  
Rehabilitation Assessment

Zusammenfassung Die Multiple Sklerose (MS) führt häufig zu vorzeitiger Erwerbsunfähigkeit, allerdings sind die hierfür verantwortlichen Faktoren zumindest für Deutschland nur unzureichend bekannt, und oftmals werden relevante Symptome bei der Leistungsbeurteilung und der Rehabilitationsplanung nicht ausreichend beachtet. Daher identifizierten wir in einem zweiteiligen Forschungsprojekt zunächst die relevanten Einflussgrößen, die die berufliche Leistungsfähigkeit bei MS-Betroffenen determinieren, und entwickelten darauf basierend MS-spezifische Assessment-Instrumente. Im ersten Teil wurde nach einer literaturrecherche ein umfangreicher Fragebogen entwickelt, der u. a. standardisierte und validierte Instrumente zu Schwierigkeiten im Beruf (»Würzburger Screening für berufliche Problemlagen«, »MS Work Difficulties Questionnaire (MSWDQ)« und Fragen zur Symptombelastung beinhaltete. Damit wurden nach einem Vortest bei 20 MS-Patienten insgesamt 279 (189 erwerbstätige, 90 berentete) MS-Patienten befragt, die zu einer stationären Rehabilitationsmaßnahme im Neurologischen Rehabilitationszentrum Quellenhof aufgenommen worden waren. In beiden Gruppen beurteilten 81 % bzw. 74 % der Rehabilitanden ihre berufliche Tätigkeit als sehr wichtig. Als Prädiktoren für eine Erwerbstätigkeit erwiesen sich Alter, Krankheitsdauer, Behinderungsgrad (EDSS) und Bildungsniveau. Mithilfe einer Regressionsanalyse waren berufliche Schwierigkeiten (Würzburger Screening und MSWDQ) mit den Symptomen kognitive Störungen, depressive Verstimmung, Schmerzen, Mobilitätseinschränkungen bzw. Gangstörungen, Gleichgewichtsstörungen, Fatigue und Sehstörungen assoziiert. Im zweiten Teil wurden zu jedem dieser Symptome anhand einer erneuten Literaturrecherche standardisierte und validierte, patientenbasierte Assessment-Instrumente ausgewählt. Diese wurden zusammen mit dem Fragebogen des ersten Teils bei einer zweiten Stichprobe von weiteren 102 berufstätigen Rehabilitanden mit MS eingesetzt, von denen 76 (75 %) an der postalischen Nachbefragung 6 Monate nach Entlassung teilnahmen. Mithilfe einer erneuten Regressionsanalyse, den Summenwerten der Symptomskalen und dem Vergleich zwischen mittlerweile berenteten (n = 9) und weiterhin berufstätigen (n = 62) Patienten konnten die im vorherigen Teil erhobenen Befunde bestätigt werden. Damit steht nun ein Set von Assessment-Instrumenten zur Verfügung, mit dem bei MS-Betroffenen berufliche Problemlagen identifiziert und das berufliche Leistungsvermögen detailliert und standardisiert erfasst und zuverlässig beurteilt werden kann. Schlüsselwörter: Multiple Sklerose, Erwerbsfähigkeit, Rehabilitation, Assessment Abstract Multiple sclerosis (MS) is a common cause of unemployment, but the influencing factors are not well understood, at least in Germany, and disabling symptoms are often neglected. We therefore attempted (1) to identify relevant factors that predict employment, and (2) to develop assessment instruments specifically designed for work difficulties and symptoms that impact work ability. In the first part of the study, 279 MS patients admitted to inpatient neurological rehabilitation (189 employed, 90 unemployed) were evaluated with a comprehensive questionnaire that included standardized instruments dealing (among others) with work difficulties (“Würzburger Screening für berufliche Problemlagen”,“MS Work Difficulties Questionnaire [MSWDQ]”) and symptom burden. Most patients in both groups (81 % and 74 %) stated that working was very important for them. Age, disease duration, disability (EDSS) and education were predictive for employment. By means of regression analysis, work difficulties were associated with the following symptoms: cognitive dysfunction, depression, pain, mobility restrictions and gait disorders, balance problems, fatigue and visual disturbances. In the second part of the study, patient-oriented outcomes were identified for each of these symptoms and applied to another sample of 102 MS patients admitted to rehabilitation, of whom 76 (75 %) were evaluated at follow-up after 6 months. Regression analysis, sum scores of symptom scales and comparison between retired (n = 9) and still employed (n = 62) patients confirmed our previous results. With the findings of this study, a set of assessment instruments is available that may help to identify work difficulties and to properly evaluate the ability to work in patients with MS. Keywords: multiple sclerosis, employment, rehabilitation, assessment

The International Classification of Functioning, Disability, and Health (ICF) as a community participation model for people with multiple sclerosis: A hierarchical regression analysis

2020 ◽  
Vol 26 (2) ◽  
pp. 55-72
Author(s):  
Joseph Pfaller ◽  
Fong Chan ◽  
Kanako Iwanaga ◽  
Jia-Rung Wu ◽  
Stuart Rumrill ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Regression Analysis ◽  
Community Participation ◽  
International Classification Of Functioning ◽  
Self Management ◽  
Hierarchical Regression ◽  
Personal Factors ◽  
Disability And Health ◽  
The Relationship

AbstractMultiple sclerosis (MS) is a central nervous system disorder that impacts more than 400,000 people in the U.S. The disease results in multiple functional impairments that are diverse and varied across individuals. Additonally, MS has a profound impact on community participation which, like other rehabilitation outcomes, cannot be explained on the basis of functional limitations alone. The purpose of this study was to develop and evaluate a model of community participation for people living with MS using the World Health Organization (WHO) International Classification of Functioning, Disability, and Health (ICF) framework. The model focused on the roles that personal factors have as predictors of community participation, while also serving as mediators and moderators for the relationship between activity limitation and participation. Results from the hierarchical regression analysis indicated that demographic characteristics (i.e. MS type), personal factors (i.e. core self-evaluations (CSE), MS self-management, resilience, and social skills), and activity limitations accounted for 64% of the variance in participation. Further, mediation analysis indicated that CSE mediated the relationship between activity limitation and community participation. Finally, moderation analysis indicated an interaction effect between educational attainment and MS self-management. Implications for future research in rehabilitation and clinical application are discussed.

Natalizumab restores evoked potential abnormalities in patients with relapsing–remitting multiple sclerosis

2010 ◽  
Vol 17 (2) ◽  
pp. 198-203 ◽  
Author(s):  
Sven G Meuth ◽  
Stefan Bittner ◽  
Carola Seiler ◽  
Kerstin Göbel ◽  
Heinz Wiendl
Keyword(s):  
Multiple Sclerosis ◽  
Evoked Potentials ◽  
Motor Evoked Potentials ◽  
Sum Score ◽  
Relapsing Remitting ◽  
Natalizumab Treatment ◽  
Remitting Multiple Sclerosis ◽  
Sum Scores ◽  
Multiple Sclerosis Patients ◽  
Relapsing Remitting Multiple Sclerosis

Background and Objective: The objective of this study was to examine the effects of natalizumab on functional parameters assessed by evoked potentials (visual [VEP], somatosensory [SEP] and motor evoked potentials [MEP]) in a cohort study in relapsing–remitting multiple sclerosis patients. Methods: EP data of 44 patients examined 12 months prior to natalizumab treatment, at the timepoint of treatment initiation and 1 year later were compared. Sum scores (VEP, MEP, SEP) were evaluated and correlated with the Expanded Disability Status Scale. Results: Improvement of the VEP sum score was found in 33% of natalizumab-treated patients but only in 9% of the same patients prior to treatment ( p = 0.041). A comparable situation was found for SEP (improvement: 32% versus 5%; worsening: 11% versus 37%; p = 0.027). For MEP no significant differences were seen (improvement: 10% versus 18%; worsening: 5% versus 29%; p = 0.60). EP recordings (VEP = SEP > MEP) have the capacity to demonstrate treatment effects of natalizumab on a functional level. Conclusions: Natalizumab therapy increases the percentage of patients showing stable or even ameliorated electrophysiological parameters in the investigated functional systems.

scholarly journals Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis

2017 ◽  
Vol 24 (5) ◽  
pp. 663-674 ◽  
Author(s):  
Alessandra Solari ◽  
Andrea Giordano ◽  
Francesco Patti ◽  
Maria Grazia Grasso ◽  
Paolo Confalonieri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Palliative Care ◽  
Controlled Trial ◽  
Statistical Significance ◽  
Symptom Burden ◽  
Palliative Approach ◽  
Home Based ◽  
Palliative Care Outcome Scale

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.

scholarly journals A logistic regression analysis of risk factors in ME/CFS pathogenesis

BMC Neurology ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Eliana M. Lacerda ◽  
Keith Geraghty ◽  
Caroline C. Kingdon ◽  
Luigi Palla ◽  
Luis Nacul
Keyword(s):  
Risk Factors ◽  
Multiple Sclerosis ◽  
Regression Analysis ◽  
Risk Factor ◽  
Family History ◽  
Disease Onset ◽  
Healthy Controls ◽  
Lower Income ◽  
Wide Range ◽  
History Of

Abstract Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex disease, whose exact cause remains unclear. A wide range of risk factors has been proposed that helps understanding potential disease pathogenesis. However, there is little consistency for many risk factor associations, thus we undertook an exploratory study of risk factors using data from the UK ME/CFS Biobank participants. We report on risk factor associations in ME/CFS compared with multiple sclerosis participants and healthy controls. Methods This was a cross-sectional study of 269 people with ME/CFS, including 214 with mild/moderate and 55 with severe symptoms, 74 people with multiple sclerosis (MS), and 134 healthy controls, who were recruited from primary and secondary health services. Data were collected from participants using a standardised written questionnaire. Data analyses consisted of univariate and multivariable regression analysis (by levels of proximity to disease onset). Results A history of frequent colds (OR = 8.26, P <= 0.001) and infections (OR = 25.5, P = 0.015) before onset were the strongest factors associated with a higher risk of ME/CFS compared to healthy controls. Being single (OR = 4.41, P <= 0.001), having lower income (OR = 3.71, P <= 0.001), and a family history of anxiety is associated with a higher risk of ME/CFS compared to healthy controls only (OR = 3.77, P < 0.001). History of frequent colds (OR = 6.31, P < 0.001) and infections before disease onset (OR = 5.12, P = 0.005), being single (OR = 3.66, P = 0.003) and having lower income (OR = 3.48, P = 0.001), are associated with a higher risk of ME/CFS than MS. Severe ME/CFS cases were associated with lower age of ME/CFS onset (OR = 0.63, P = 0.022) and a family history of neurological illness (OR = 6.1, P = 0.001). Conclusions Notable differences in risk profiles were found between ME/CFS and healthy controls, ME/CFS and MS, and mild-moderate and severe ME/CFS. However, we found some commensurate overlap in risk associations between all cohorts. The most notable difference between ME/CFS and MS in our study is a history of recent infection prior to disease onset. Even recognising that our results are limited by the choice of factors we selected to investigate, our findings are consistent with the increasing body of evidence that has been published about the potential role of infections in the pathogenesis of ME/CFS, including common colds/flu.

P64-T Autonomic symptom burden can predict disease activity in early multiple sclerosis

2019 ◽  
Vol 130 (7) ◽  
pp. e57
Author(s):  
Tin Pavicic ◽  
Magdalena Krbot Skoric ◽  
Luka Crnosija ◽  
Tereza Gabelic ◽  
Barbara Barun ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Activity ◽  
Symptom Burden ◽  
Autonomic Symptom

Correlation of Symptom Assessment with Genotyping Analysis of Saliva Samples in a Large Cohort of Myeloproliferative Neoplasm Patients

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 1732-1732
Author(s):  
Huong (Marie) Nguyen ◽  
David A. Hinds ◽  
Kimberly E. Barnholt ◽  
Amy K. Kiefer ◽  
Chuong B. Do ◽  
...  
Keyword(s):  
Regression Analysis ◽  
Abdominal Pain ◽  
Research Funding ◽  
Bone Pain ◽  
Symptom Burden ◽  
Female Gender ◽  
Symptom Assessment ◽  
Employment Equity ◽  
Web Based ◽  
Equity Ownership

Abstract Abstract 1732 Background: In addition to chronic myelogenous leukemia (CML), the classic myeloproliferative neoplasms (MPNs) include polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (PMF). The JAK2 V617F mutation (V617F) can be detected through genomic analysis of peripheral blood in 95% of PV and 50–60% of ET and MF patients (pts). These MPNs are often associated with debilitating symptoms and decreased quality of life (QOL). Systemic mastocytosis (SM) is an uncommon MPN in which proliferation of mast cells can result in mediator symptoms, as well as organ damage in advanced disease. We sought to compare the symptom burden of individuals with CML and SM to pts with classic MPNs in a more quantitative manner using a web-based recruitment design. Methods: Individuals with MPN were recruited through a web-based outreach effort. Participants gave IRB-approved consent, and completed on-line surveys of demographic information and questions based on the validated MPN-symptom assessment form (MPN-SAF). In addition, pts submitted saliva samples which were genotyped with SNP arrays based on the Illumina OmniExpress BeadChip, including probes for V617F. Regression analysis was used to evaluate the correlation between symptom responses and genotype data for 495 pts (118 PV, 121 ET, 97 MF, 85 SM, and 74 CML). For each MPN diagnosis, mean scores were calculated based on six fatigue-focused questions (Fatigue-6) and for six other symptoms (Symptom-6): early satiety, abdominal pain/discomfort, inactivity, night sweats, pruritis, and bone pain (ranked from 0–10; 10 = worst). ET pts' scores were used as the reference in the regression analysis based on prior data showing that ET pts have the lowest symptom burden among the classic MPNs. Individual symptoms, Fatigue-6, Symptom-6, and QOL (ranked 0–10; 10=worst) were analyzed using regression analysis against age, gender, diagnosis and V617F status. Results: Median age was 56 years (7–87), with 70% women. V617F was detected in 63% of classic MPN pts (87% PV, 46% ET, 56% MF). Analysis of Fatigue-6 scores revealed that age in years was negatively correlated with reported fatigue (β=-0.007 per year, P=0.032), while female gender and SM diagnosis were positively correlated with fatigue (female: β=0.33, P=2.4×10−4; SM: β=0.46, P=7.6×10−4). This trend was also seen for the Symptom-6: age (β=-0.025, P=5.8×10−4), female gender (β=0.73, P=1.4×10−4), and SM (β=1.8, P=5.0×10−10). Both Fatigue-6 and Symptom-6 were positively correlated with QOL, but Fatigue-6 had a much stronger association with QOL than did Symptom-6 (β=1.3, P=1.5×10−28 vs. β=0.36, P=1.2×10−11). When analyzed individually, abdominal pain/discomfort, pruritis, and bone pain were significantly correlated with V617F (β=0.676, P=0.0371; β=0.768, P=0.0241; β=0.791, P=0.0341, respectively), though these associations were not significant when all six symptoms were evaluated together (Symptom-6: β=0.315, P=0.171). There was no statistically significant correlation between V617F and Symptom-6. In addition, there was no correlation between any symptom and a germline variant in telomerase reverse transcriptase (TERT) rs2853677, identified as a novel predisposition allele for MPNs using a genome-wide association study of this cohort. Conclusion: Using a novel, web-based recruitment design combining MPN symptom assessment and genotyping of saliva samples, we identified significant correlations between 3 specific symptoms (pruritis, abdominal pain/discomfort, and bone pain) with V617F. Fatigue was also more strongly associated than other symptoms with QOL. There was no association between symptoms and TERT. This design is a powerful tool for future studies seeking to correlate symptoms with genotyping analysis. Disclosures: Hinds: 23andMe: Employment, Equity Ownership, Patents & Royalties. Barnholt:23andMe, Inc.: Employment. Kiefer:23andMe, Inc.: Employment. Do:23andMe, Inc.: Employment, Equity Ownership, Patents & Royalties. Eriksson:23andMe, Inc.: Employment, Equity Ownership, Patents & Royalties. Mountain:23andMe, Inc.: Consultancy, Employment, Honoraria, Patents & Royalties, Research Funding. Francke:23andMe, Inc.: Employment, Honoraria, Research Funding; Locus Development: Consultancy, Membership on an entity's Board of Directors or advisory committees. Tung:23andMe, Inc.: Employment. Zehnder:23andMe, Inc.: Unpaid advisor and collaborator Other. Gotlib:23andMe, Inc.: Unpaid advisor and collaborator Other. Mesa:23andMe, Inc: Unpaid advisor and collaborator Other.

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