Patient-Reported Outcome Severity and Emotional Salience Network Disruption in Multiple Sclerosis

2022 ◽  
Author(s):  
Tom A. Fuchs ◽  
Caila B. Vaughn ◽  
Ralph H. B. Benedict ◽  
Bianca Weinstock-Guttman ◽  
Niels Bergsland ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcome ◽  
Salience Network ◽  
Outcome Severity ◽  
Patient Reported ◽  
Emotional Salience ◽  
Network Disruption

scholarly journals Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!

2018 ◽  
Vol 25 (4) ◽  
pp. 500-509 ◽  
Author(s):  
Liesbet M Peeters ◽  
Caspar EP van Munster ◽  
Bart Van Wijmeersch ◽  
Robin Bruyndonckx ◽  
Ilse Lamers ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Personalized Treatment ◽  
Multidisciplinary Data ◽  
Patient Reported ◽  
Longitudinal Data Collection ◽  
Patient Profiling ◽  
Data Infrastructures

Personalized treatment is highly desirable in multiple sclerosis (MS). We believe that multidisciplinary measurements including clinical, functional and patient-reported outcome measures in combination with extensive patient profiling can enhance personalized treatment and rehabilitation strategies. We elaborate on four reasons behind this statement: (1) MS disease activity and progression are complex and multidimensional concepts in nature and thereby defy a one-size-fits-all description, (2) functioning, progression, treatment, and rehabilitation effects are interdependent and should be investigated together, (3) personalized healthcare is based on the dynamics of system biology and on technology that confirms a patient’s fundamental biology and (4) inclusion of patient-reported outcome measures can facilitate patient-relevant healthcare. We discuss currently available multidisciplinary MS data initiatives and introduce joint actions to further increase the overall success. With this topical review, we hope to drive the MS community to invest in expanding towards more multidisciplinary and longitudinal data collection.

Assessment of computer adaptive testing version of the Neuro-QOL for people with multiple sclerosis

2018 ◽  
Vol 25 (13) ◽  
pp. 1791-1799 ◽  
Author(s):  
Brian C Healy ◽  
Jonathan Zurawski ◽  
Cindy T Gonzalez ◽  
Tanuja Chitnis ◽  
Howard L Weiner ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Computerized Adaptive Testing ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Adaptive Testing ◽  
Patient Reported Outcome ◽  
Longitudinal Change ◽  
Sf 36 ◽  
Patient Reported

Background: To date, the computerized adaptive testing (CAT) version of the Neuro-quality of life (QOL) has not been assessed in a large sample of people with multiple sclerosis (MS). Objective: The aim of this study was to assess the associations between the CAT version of Neuro-QOL and other clinical and patient-reported outcome measures. Methods: Subjects ( n = 364) enrolled in SysteMS completed the CAT version of the Neuro-QOL and the 36-Item Short Form Survey (SF-36) within 4 weeks of a clinical exam that included the Multiple Sclerosis Functional Composite-4 (MSFC-4). The correlations between the Neuro-QOL domains and the MSFC-4 subscores and the SF-36 scores were calculated. The changes over time in the Neuro-QOL and other measures were also examined. Results: The lower extremity functioning score of the Neuro-QOL showed the highest correlations with MSFC-4 components including Timed 25-Foot Walk, 9-Hole Peg Test, and cognitive score. The expected domains of the Neuro-QOL showed high correlations with the SF-36 subscores, and some Neuro-QOL domains were associated with many SF-36 subscores. There was limited longitudinal change on the Neuro-QOL domains over 12 months, and the change was not associated with change on other measures. Conclusion: The CAT version of the Neuro-QOL shows many of the expected associations with clinical and patient-reported outcome measures.

Do patient and proxy agree? Long-term changes in multiple sclerosis physical impact and walking ability on patient-reported outcome scales

2014 ◽  
Vol 20 (12) ◽  
pp. 1616-1623 ◽  
Author(s):  
Judith M Sonder ◽  
Lisanne J Balk ◽  
Libertje VAE Bosma ◽  
Chris H Polman ◽  
Bernard MJ Uitdehaag
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcome ◽  
Study Data ◽  
Walking Ability ◽  
Impact Scale ◽  
Patient Reported ◽  
Proxy Responses ◽  
Physical Impact ◽  
The Impact

Background: Patient-reported outcome scales (PROs) are useful in monitoring changes in multiple sclerosis (MS) over time. Although these scales are reliable and valid measures in longitudinal studies in MS patients, it is unknown what the impact is when obtaining longitudinal data from proxies. Objective: The objective of this paper is to compare longitudinal changes in patient and proxy responses on PROs assessing physical impact of MS and walking ability. Methods: In a prospective observational study, data on the Multiple Sclerosis Impact Scale (MSIS-29 physical) and Multiple Sclerosis Walking Scale (MSWS-12) were obtained from 137 patient-proxy couples at baseline and at two-year follow-up. Demographic and disease-related variables explaining agreement or disagreement between patients and proxies were investigated using linear regression analyses. Results: Full agreement was found in 56% (MSIS) and 62% (MSWS) of the patient-proxy couples. Complete disagreement was very rare for both scales (2% MSIS, 5% MSWS). When patients were more positive than proxies, a higher age, longer disease duration, longer patient-proxy relationship and increased levels of depression, anxiety and caregiver burden in proxies were observed. Conclusion: In the majority of the patient-proxy couples there was agreement. Proxies can serve as a valuable source of information, but caution remains essential when using scores from proxies.

scholarly journals Retrospective cohort study of the relationship between systolic blood pressure variability and multiple sclerosis disability

BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e034355 ◽  
Author(s):  
Myla D Goldman ◽  
Seulgi Min ◽  
Jennifer M Lobo ◽  
Min-Woong Sohn
Keyword(s):  
Multiple Sclerosis ◽  
Blood Pressure ◽  
Cohort Study ◽  
Systolic Blood Pressure ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
The Relationship

ObjectiveTo examine the relationship between visit-to-visit systolic blood pressure (SBP) variability and patient-reported outcome measure of disability in multiple sclerosis (MS) patients.DesignA retrospective cohort study of individuals with MS who completed a patient-determined disease steps (PDDS) scale between 2011 and 2015 at an MS specialty clinic.ParticipantsIndividuals with MS for whom both a completed PDDS scale and ≥3 SBP measures within the prior 12 months of the survey were available.Main outcome measureParticipants were grouped into three classes of disability (no or mild (PDDS 0–1), moderate (2–3), severe (4–7)). SBP variability was calculated as within-subject SD using all SBP measures taken during the past 12 months. SBP variability was analysed by Tertile groups.ResultsNinety-two subjects were included in this analysis. Mean PDDS score was 2.22±1.89. Compared with subjects in Tertile 1 (lowest variability), the odds of being in a higher disability group was 3.5 times higher (OR=3.48; 95% CI: 1.08 to 11.25; p=0.037) in Tertile 2 and 5.2 times higher (OR=5.19; 95% CI: 1.53 to 17.61; p=0.008) in Tertile 3 (highest variability), independent of mean SBP, age, sex, race/ethnicity, body mass index and comorbidities (p for trend=0.008). Mean PDDS scores were 1.52±1.18 in Tertile 1, 2.73±1.02 in Tertile 2 and 2.42±0.89 in Tertile 3 after adjusting for the same covariates.ConclusionsOur results show a significant gradient relationship between SBP variability and MS-related disability. More research is needed to determine the underlying pathophysiological relationship between SBP variability and MS disability progression.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

scholarly journals Designing a Self-Perception Cognitive Questionnaire for Italian Multiple Sclerosis Patients (Sclerosi Multipla Autovalutazione Cognitiva, SMAC). A Preliminary Exploratory Pilot Study

2021 ◽  
Vol 12 ◽  
Author(s):  
Alice Riccardi ◽  
Francesca Ognibene ◽  
Sara Mondini ◽  
Massimo Nucci ◽  
Monica Margoni ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Neuropsychological Tests ◽  
Patient Reported Outcome ◽  
Self Perception ◽  
Item Questionnaire ◽  
Patient Reported ◽  
Sclerosi Multipla ◽  
Relapsing Remitting ◽  
Multiple Sclerosis Patients ◽  
Sorting Test

Background: Although cognition in multiple sclerosis (MS) is assessed by means of several neuropsychological tests, only a few tools exist to investigate patients' perspectives on cognitive functioning.Objective: To develop a new questionnaire aimed at exploring patients' self-perception with respect to cognition in Italian MS patients.Methods: A total of 120 relapsing-remitting MS (RRMS) patients and 120 matched healthy controls (HC) completed a 25-item questionnaire called the Sclerosi Multipla Autovalutazione Cognitiva (SMAC). The Symbol Digit Modalities Test (SDMT), the Delis-Kaplan Executive Function System Sorting Test (D-KEFS ST), the Beck Depression Inventory (BDI-II), and the Fatigue Scale (FSS) were also administered to the patients.Results: Significantly higher SMAC scores were displayed by RRMS patients compared with HC (30.1 ± 16.9 vs. 23.4 ± 10.4, p = 0.003). SMAC inversely correlated with SDMT (r = −0.31, p < 0.001), D-KEFS ST FSC (r = −0.21, p = 0.017), D-KEFS ST FSD (r = −0.22, p = 0.015) and D-KEFS ST SR (r = −0.19, p = 0.035) and positively correlated with FSS (r = 0.42, p < 0.001) and BDI-II (r = 0.59, p < 0.001). Cronbach's alpha coefficient for the questionnaire was 0.94.Conclusion: Preliminary findings suggest that SMAC is a promising patient-reported outcome to be included in MS neuropsychological evaluation and thus warrants being further tested and developed.

A-69 Baseline Predictors of Longitudinal SDMT Performance in Individuals with Multiple Sclerosis

2021 ◽  
Vol 36 (6) ◽  
pp. 1111-1111
Author(s):  
Margaret Cadden ◽  
Lindsay Barker ◽  
Brian Healy ◽  
Tanuja Chitnis ◽  
Howard Weiner ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Brain Mri ◽  
Patient Reported Outcome ◽  
Longitudinal Change ◽  
Older Individuals ◽  
Baseline Measure ◽  
Brain Reserve ◽  
Moderating Factors ◽  
Patient Reported ◽  
Cognitive Problems

Abstract Objective More than half of persons with MS (PwMS) experience cognitive difficulties during the course of their illness. However, not everyone develops cognitive problems suggesting a role for important moderating factors. The object of the current study was to identify baseline predictors of cognitive trajectories in PwMS. Methods 680 PwMS completed the Symbol Digit Modalities Test (SDMT) and a battery of patient-reported outcome (PRO) measures as part their participation in The Comprehensive Longitudinal Investigation of Multiple Sclerosis at Brigham and Women’s Hospital (CLIMB). Each participant had at least 2 SDMT measurements as well as demographic (age, sex), clinical (EDSS, disease duration, course type), and PRO (fatigue, depression, and quality of life) data. Participants had a concurrent brain MRI scan at the time of the baseline SDMT measurement; intracranial cavity (ICC) was calculated for each participant as a proxy of brain reserve. The association between each baseline measure and the longitudinal change in the SDMT over the course of the follow-up period was calculated using a linear mixed effects model. Results Increased baseline age (95% CI: −0.29, −0.06; p = 0.002), increased baseline EDSS (95% CI: −0.24, −0.01; p = 0.037), and decreased baseline ICC (95% CI: 0.02, 0.25; p = 0.023) were each associated with a greater decline in the SDMT score longitudinally. Although most PRO measures were cross-sectionally correlated with SDMT performance, none were associated with longitudinal change. Discussion Older individuals and those with more clinical disability are likely to experience declines in SDMT performance over time. Individuals with high baseline brain reserve tend to have more favorable SDMT trajectories.

scholarly journals Comparison of patient-reported outcome measures in multiple sclerosis

2013 ◽  
Vol 128 (2) ◽  
pp. 114-121 ◽  
Author(s):  
N. Schäffler ◽  
P. Schönberg ◽  
J. Stephan ◽  
J.-P. Stellmann ◽  
S. M. Gold ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported
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