Does the Multiple Sclerosis Impact Scale-29 (MSIS-29) have the range to capture the experience of fully ambulatory multiple sclerosis patients? Learnings from the ASCLEPIOS studies
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PROVIDER: S-EPMC10540592 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe MSIS-29 measures the physical and psychological impact of MS.ObjectiveThe associations between MSIS-29 domains and demographic/clinical aspects were examined and trajectories analysed over time.MethodsData were collected in the Trajectories of Outcome in Neurological Conditions study for a diverse population of people with MS, with follow-up for up to 5 years. Following Rasch analysis, minimal important change (MIC) was computed for ensuing total, physical and psychological domains.ResultsFit to the Rasch model using data from 5921 participants validated physical, psychological and total domains, and the conversion table transforms raw scores to interval-level metric equivalents. These domains showed significant differences across demographic (age, gender, employment, education, and marital status) and clinical (subtype, treatment, and duration) factors with large effect sizes. The MIC scores were physical: 9.1, total: 14.1, which were both above measurement error, and psychological: 5.5 which was not, so 1.6% of participants reported psychological change which was clinically important but not statistically significant. Trajectory analysis showed three groups, one stable and two with significant slopes, improving and deteriorating.ConclusionThe MSIS-29 has shown adequate fit to the Rasch model after accommodating problems with local item dependency, through a bi-factor solution. The domains showed good discrimination across key factors.
| S-EPMC11568641 | biostudies-literature
Project description:Background and aimThe psychometric properties of rating scales are sample dependent and need evaluations in different samples. The Multiple Sclerosis Impact Scale (MSIS-29), a new patient based rating scale for multiple sclerosis (MS) was predominantly developed from a community based sample derived from the MS Society. A number of important patient characteristics of this sample remain unknown. The aim of the study was to evaluate five psychometric properties of the MSIS-29 in three hospital based samples: people admitted for rehabilitation, people admitted for intravenous corticosteroid treatment for MS relapses, and people with primary progressive MS.MethodsPeople with MS were recruited from the three clinical settings. They completed several health measures. MSIS-29 data were evaluated for data quality, scaling assumptions, acceptability, reliability and validity, and compared with those from a previously reported community based study.ResultsA total of 233 people (rehabilitation p=53; corticosteroids p=76; primary progressive p=104) completed questionnaires. In all samples, missing data were low (<or=2.2%), scaling assumptions were satisfied, and reliability was high (>or=0.91). Correlations between the MSIS-29 and other scales were consistent with a priori hypotheses. Findings were consistent with those from the community samples.ConclusionsThe psychometric properties of the MSIS-29 are consistent across three hospital based samples, and similar to those in the community samples. These findings further support its use as an outcome measure in different clinical settings.
| S-EPMC1757371 | biostudies-literature
Project description:BackgroundThere may be difficulties in the use of self report measurements in patients with cognitive impairment or serious mood disturbances which interfere with reliable self assessment, as may be the case in multiple sclerosis (MS). In such cases proxies may provide valuable information. However, before using any questionnaires in a proxy sample, the questionnaire should be evaluated for proxy use.ObjectiveTo evaluate the psychometric properties of the 29 item Multiple Sclerosis Impact Scale (MSIS-29) when used by proxies of MS patients.MethodsA sample of 62 partners of MS patients completed the MSIS-29. The data were evaluated for the psychometric criteria of the MSIS-29, including data quality, scaling assumptions, acceptability, reliability, validity, and responsiveness.ResultsPsychometric evaluation was satisfactory; data quality was high, and scaling assumptions and acceptability were good. Reliability was high (alpha>0.80). Findings were consistent with results of a psychometric evaluation in a patient sample.ConclusionsThe MSIS-29 can be used reliably in proxies of patients with MS. As a next step the relation between data obtained from patients and proxies needs to be studied, focusing on factors that may affect agreement and discrepancies.
| S-EPMC1739474 | biostudies-literature
Project description:Objective: Since the properties of health-related quality of life measures vary across samples, studies directly comparing the properties of different measures can be useful in understanding their relative strengths and limitations. We aimed to compare the psychometric properties of the Health Utilities Index Mark III (HUI3) and the Multiple Sclerosis Impact Scale-29 (MSIS-29). Methods: In Spring 2020, North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the HUI3, MSIS-29, Patient Determined Disease Steps (PDDS) and SymptoMScreen. For the HUI3 and MSIS-29 we assessed floor and ceiling effects, construct validity, and internal consistency reliability. We used relative efficiency to compare the discriminating ability of the two measures with respect to disability. Results: We included 5,664 participants in the analysis, with mean (SD) age 63 (10.1) years; 4,579 (80.8%) were women. For the HUI3 the mean (SD) score was 0.44 (0.32), for the MSIS-29 physical it was 34.0 (24.2) and for the MSIS-29 psychological it was 25.9 (20.4). Neither of the measures had floor or ceiling effects, and internal consistency reliability was > 0.70 for both. The HUI3 and MSIS-29 physical were strongly correlated (r = -0.78; 95%CI:-0.79,-0.77). The correlation between the HUI3 and MSIS-29 psychological was weaker but remained moderately strong (r = -0.64; 95%CI:-0.66,-0.63). After adjusting for sociodemographic and clinical factors, relative efficiency to discriminate between disability (PDDS) groups was highest for the MSIS-29 physical scale, followed by the HUI3. Conclusion: Both measures had adequate validity and reliability. The MSIS-29 physical discriminated between disability groups better than the HUI3.
| S-EPMC8718449 | biostudies-literature
Project description:Background: Mapping can be performed to predict utility values from condition-specific measures when preference-based measures are absent. A previously developed algorithm that predicts EQ-5D-3L index values from the Multiple Sclerosis Impact Scale (MSIS-29) has not yet been externally validated. Aim: To examine the external validity of a previously developed mapping algorithm by testing the accuracy of predicting EQ-5D-3L index values from MSIS-29 among multiple sclerosis (MS) patients in Sweden. Methods: Cross-sectional individual-level data were collected from population-based Swedish registers between 2011 and 2014. Health-related quality of life was assessed through MSIS-29 and EQ-5D-3L at one point in time among 767 individuals with known disability level of MS. A previously developed mapping algorithm was applied to predict EQ-5D index values from MSIS-29 items, and the predictive accuracy was assessed through mean absolute error and root mean square error. Results: When applying the algorithm, the predicted mean EQ-5D-3L index value was 0.77 compared to the observed mean index value of 0.75. Prediction error was higher for individuals reporting EQ-5D values <0.5 compared to individuals reporting EQ-5D values ≥0.5. Mean absolute error (0.12) and root mean square error (0.18) were smaller or equal to the prediction errors found in the original mapping study. Conclusion: The mapping algorithm had similar predictive accuracy in the two independent samples although results showed that the highest predictive performance was found in groups with better health. Varied predictive accuracy in subgroups is consistent with previous studies and strategies to deal with this are warranted.
| S-EPMC6132828 | biostudies-literature
Project description:BackgroundStudy objectives were to evaluate the Multiple Sclerosis Impact Scale (MSIS-29) and explore an optimized scoring structure based on empirical post-hoc analyses of data from the Phase III ADVANCE clinical trial.MethodsADVANCE MSIS-29 data from six time-points were analyzed in a sample of patients with relapsing-remitting multiple sclerosis (RRMS). Rasch Measurement Theory (RMT) analysis was undertaken to examine three broad areas: sample-to-scale targeting, measurement scale properties, and sample measurement validity. Interpretation of results led to an alternative MSIS-29 scoring structure, further evaluated alongside responsiveness of the original and revised scales at Week 48.ResultsRMT analysis provided mixed evidence for Physical and Psychological Impact scales that were sub-optimally targeted at the lower functioning end of the scales. Their conceptual basis could also stand to improve based on item fit results. The revised MSIS-29 rescored scales improved but did not resolve the measurement scale properties and targeting of the MSIS-29. In two out of three revised scales, responsiveness analysis indicated strengthened ability to detect change.ConclusionThe revised MSIS-29 provides an initial evidence-based improved patient-reported outcome (PRO) instrument for evaluating the impact of MS. Revised scoring improves conceptual clarity and interpretation of scores by refining scale structure to include Symptoms, Psychological Impact, and General Limitations.Clinical trialADVANCE (ClinicalTrials.gov identifier NCT00906399).
| S-EPMC5562349 | biostudies-literature
Project description:BackgroundAmbulatory impairment is a common and complex manifestation of multiple sclerosis (MS), and longitudinal patterns are not well understood.ObjectiveTo characterize longitudinal walking speed trajectories in a general MS patient population and in those with early disease (⩽ 5 years from onset), identify subgroups with similar patterns, and examine associations with individual attributes.MethodsUsing a retrospective cohort study design, latent class growth analysis was applied to longitudinal timed 25-foot walk (T25-FW) data from 7683 MS patients, to determine T25-FW trajectories. Associations were evaluated between trajectory assignment and individual attributes. Analyses were repeated for 2591 patients with early disease.ResultsIn the general patient population, six trajectories were discerned, ranging from very minimal to very high impairment at baseline, with variability in impairment accrual. The clusters with moderate to very high walking impairment were associated with being female, older and Black American, longer symptom duration, progressive course, and depressive symptoms. In the early disease subset, eight trajectories were discerned that included two subgroups that rapidly accrued impairment.ConclusionWe identified novel subgroups of MS patients will distinct long-term T25-FW trajectories. These results underscore that socially disadvantaged and economically marginalized MS patients are the most vulnerable for severe ambulatory impairment.
| S-EPMC10528275 | biostudies-literature
Project description:Participatory research has gained traction as an approach to unlock perspectives when creating scientific knowledge and to facilitate societal changes. By conducting research with people, participatory research strives to engage individuals' perspectives in designing, conducting, and disseminating the research. Nevertheless, few studies have unpacked how understandings of the studied phenomenon are shaped among diverse research partners and, concurrently, how different perspectives are combined. Nested within an overall participatory mixed methods study on aging with multiple sclerosis (MS), this qualitative study explores how understandings of aging with MS are shaped in encounters between university researchers, older adults with MS, and employees in a patient association. The study was collaboratively conducted in Denmark by three research partners: a group of older adults with MS, employees in a patient association, and university researchers. Data on how different understandings of aging with MS were represented and shaped during the three-year research process was generated through field notes, meeting minutes, focus group interviews, and individual interviews. The collected data was analyzed through a thematic network analysis. The study demonstrates how different understandings of aging with MS were represented among the research partners when the research was initiated. These understandings were shaped prior to -and, therefore, outside-the research setting, drawing from the research participants' lived experiences, professional backgrounds, and organizational cultures or situated in larger societal narratives. Through a process centered on reflexivity among the engaged research partners, the understandings of what it means to age with MS was shaped and re-shaped and eventually merged into a more dynamic understanding of later life with MS where different perspectives could co-exist. The findings demonstrate that research partners, including older adults with MS and employees from a patient association, brought diverse understandings to the study. Reflexive practices enabled these perspectives to co-exist, enhancing engagement and transparency, and fostering a dynamic understanding of later life with MS. This highlights the value of reflexivity in evolving complex understandings within participatory research.
| S-EPMC11293046 | biostudies-literature
Project description:BackgroundThere is increasing emphasis on using patient-reported outcomes (PROs) to complement traditional clinical outcomes in medical research, including in multiple sclerosis (MS). Research, particularly in oncology and heart failure, has shown that PROs can be prognostic of hard clinical endpoints such as survival time (time from study entry until death). However, unlike in oncology or cardiology, it is unknown whether PROs are associated with survival time in neurological diseases. The Multiple Sclerosis Impact Scale-29 (MSIS-29) is a PRO sensitive to short-term change in MS, with questions covering both physical and psychological quality of life. This study aimed to investigate whether MSIS-29 scores can be prognostic for survival time in MS, using a large observational cohort of people with MS.Methods and findingsFrom 15 July 2004 onwards, MSIS-29 questionnaires were completed by people with MS registered with the MS Society Tissue Bank (n = 2,126, repeated 1 year later with n = 872 of the original respondents). By 2014, 264 participants (12.4%) had died. Higher baseline MSIS-29 physical (MSIS-29-PHYS) score was associated with reduced survival time (subgroup with highest scores versus subgroup with lowest scores: hazard ratio [HR] 5.7, 95% CI 3.1-10.5, p < 0.001). Higher baseline MSIS-29 psychological score was also associated with reduced survival time (subgroup with highest scores versus subgroup with lowest scores: HR 2.8, 95% CI 1.8-4.4, p < 0.001). In those with high baseline MSIS-29 scores, mortality risk was even greater if the MSIS-29 score worsened over 1 year (HR 2.3, 95% CI 1.2-4.4, p = 0.02). MSIS-29-PHYS scores were associated with survival time independent of age, sex, and patient-reported Expanded Disability Status Scale score in a Cox regression analysis (per 1-SD increase in MSIS-29-PHYS score: HR 1.8, 95% CI 1.1-2.9, p = 0.03). A limitation of the study is that this cohort had high baseline age and disability levels; the prognostic value of MSIS-29 for survival time at earlier disease stages requires further investigation.ConclusionsThis study reports that PROs can be prognostic for hard clinical outcomes in neurological disease, and supports PROs as a meaningful clinical outcome for use in research and clinical settings.
| S-EPMC5503162 | biostudies-literature
Project description:Accurate volume measurements of the brain structures are important for treatment evaluation and disease follow-up in multiple sclerosis (MS) patients. With the aim of obtaining reproducible measurements and avoiding the intra-/inter-rater variability that manual delineations introduce, several automated brain structure segmentation strategies have been proposed in recent years. However, most of these strategies tend to be affected by the abnormal MS lesion intensities, which corrupt the structure segmentation result. To address this problem, we recently reformulated two label fusion strategies of the state of the art, improving their segmentation performance on the lesion areas. Here, we integrate these reformulated strategies in a completely automated pipeline that includes pre-processing (inhomogeneity correction and intensity normalization), atlas selection, masked registration and label fusion, and combine them with an automated lesion segmentation method of the state of the art. We study the effect of automating the lesion mask acquisition on the structure segmentation result, analyzing the output of the proposed pipeline when used in combination with manually and automatically segmented lesion masks. We further analyze the effect of those masks on the segmentation result of the original label fusion strategies when combined with the well-established pre-processing step of lesion filling. The experiments performed show that, when the original methods are used to segment the lesion-filled images, significant structure volume differences are observed in a comparison between manually and automatically segmented lesion masks. The results indicate a mean volume decrease of 1.13%±1.93 in the cerebrospinal fluid, and a mean volume increase of 0.13%±0.14 and 0.05%±0.08 in the cerebral white matter and cerebellar gray matter, respectively. On the other hand, no significant volume differences were found when the proposed automated pipeline was used for segmentation, which demonstrates its robustness against variations in the lesion mask used.
| S-EPMC7322098 | biostudies-literature