Comparative responsiveness of the health utilities index and the RAND-12 for multiple sclerosis

2021 ◽  
pp. 135245852098137
Author(s):  
Ruth Ann Marrie ◽  
Stella Leung ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
Amber Salter
Keyword(s):  
Multiple Sclerosis ◽  
Employment Status ◽  
Sociodemographic Factors ◽  
Physical Component Score ◽  
Full Time ◽  
Health Utilities Index ◽  
Research Committee ◽  
Good Test ◽  
Component Score ◽  
Health Utilities

Background: Outcome measures need to be valid and have good test–retest reliability and responsiveness. We compared the responsiveness of the RAND-12 and the Health Utilities Index—mark III (HUI3) in persons with multiple sclerosis (MS). Methods: In Spring 2018 and 2019, North American Research Committee on Multiple Sclerosis (NARCOMS) registry participants completed the HUI3, the RAND-12, and reported disability (Patient Determined Disease Steps (PDDS)) and employment status (full-time, part-time, and no). We used changes in PDDS and employment status as anchors. We assessed responsiveness using effect size, standardized response mean, and the responsiveness index. We used relative efficiency (RE) to compare the responsiveness of the health-related quality of life (HRQOL) scores, adjusting for sociodemographic factors. Results: We included 4769 participants in the analysis. They had a mean (standard deviation (SD)) age of 60.9 (10.1) years, and 3826 participants (80.2%) were women. RE was highest for the HUI3 for changes in in disability status (HUI3: 1.0, Physical Component Score-12 (PCS-12): 0.80, and Mental Component Score-12 (MCS-12): 0.41) and for changes in employment status (HUI3: 1.0, PCS-12: 0.70, and MCS-12: 0.17). Conclusion: The HUI3 was more responsive to changes in disability and employment status than the PCS-12 or MCS-12. Given the HUI3’s other strong psychometric properties, it may be the preferred generic measure of HRQOL in MS.

scholarly journals Developing a crosswalk between the RAND-12 and the health utilities index for multiple sclerosis

2019 ◽  
Vol 26 (9) ◽  
pp. 1102-1110 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Brenden Dufault ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Health Utilities Index ◽  
Research Committee ◽  
Health Utilities ◽  
The North ◽  
Many Instruments ◽  
Related Quality ◽  
Health Related

Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index—Mark III (HUI3) in persons with MS. Methods: In 2018, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry completed the RAND-12 and the HUI3 to assess HRQOL. We used item-response theory (IRT) and equipercentile linking approaches to develop a crosswalk between instruments. We compared predicted scores for the HUI3 from each crosswalk to observed scores using Pearson correlations, intraclass correlation coefficients (ICCs), and Bland–Altman plots. Results: Of 11,389 invited participants, 7129 (62.6%) responded. Predicted and observed values of the HUI3 from the IRT-linking method were moderately correlated (Pearson r = 0.76) with good concordance (ICC = 0.72). However, the Bland–Altman plots suggested biased prediction. Predicted and observed values from the equipercentile linking method were also moderately correlated (Pearson r = 0.78, ICC = 0.78). The Bland–Altman plots suggested no bias. Conclusion: We developed a crosswalk between the RAND-12 and the HUI3 in the MS population which will facilitate data harmonization efforts.

scholarly journals Comparing the MSIS-29 and the Health Utilities Index Mark III in Multiple Sclerosis

2021 ◽  
Vol 12 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Casandra Dolovich ◽  
Gary R. Cutter ◽  
Robert J. Fox ◽  
Amber Salter
Keyword(s):  
Multiple Sclerosis ◽  
Internal Consistency ◽  
Relative Efficiency ◽  
Internal Consistency Reliability ◽  
Validity And Reliability ◽  
Health Utilities Index ◽  
Research Committee ◽  
Health Utilities ◽  
Physical Scale ◽  
Ceiling Effects

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.

Factors related to employment status changes in individuals with multiple sclerosis

2005 ◽  
Vol 11 (5) ◽  
pp. 602-609 ◽  
Author(s):  
Megan M Smith ◽  
Peter A Arnett
Keyword(s):  
Multiple Sclerosis ◽  
Physical Disability ◽  
Employment Status ◽  
Disease Duration ◽  
The Other ◽  
Mood Disturbance ◽  
Work Status ◽  
Occupational Prestige ◽  
Full Time ◽  
Status Change

In a sample of 50 individuals with multiple sclerosis (MS), participants able to work full-time (‘W’), those who reduced their hours (‘CB’) and those who were unemployed (‘NW’) were compared on demographic and disease variables and symptoms that the participants identified as being responsible for their work status change. The NW group had significantly greater physical disability than the other two groups and significantly more fatigue than the W group. The CB group had significantly more years of education and higher occupational prestige ratings than the NW group. The W group reported significantly greater mood disturbance compared with the NW group. Employment status was unrelated to age, gender, full scale IQ estimate, disease duration, diagnosis duration or cognitive functioning. Ninety per cent of the CB group reported that fatigue was a primary symptom responsible for their work status change, whereas 86% of the NW group reported that broad physical/neurological symptoms were responsible for their change in work status.

scholarly journals Characterizing Long-term Disability Progression and Employment in NARCOMS Registry Participants with Multiple Sclerosis Taking Dimethyl Fumarate

2021 ◽  
Author(s):  
Amber Salter ◽  
Samantha Lancia ◽  
Gary Cutter ◽  
Robert J. Fox ◽  
Ruth Ann Marrie ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Employment Status ◽  
Dimethyl Fumarate ◽  
Long Term Effects ◽  
Disability Progression ◽  
Research Committee ◽  
Work Related ◽  
Secondary Progressive

Abstract Background: Delayed-release dimethyl fumarate (DMF) is effective in relapsing-remitting multiple sclerosis (RRMS), but long-term effects of DMF on disability and disease progression in clinical settings are unknown. We evaluated disability and employment outcomes in persons with RRMS treated with DMF for up to 5 years. Methods: This longitudinal study included US North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants with RRMS reporting DMF initiation in fall 2013 through spring 2018 with 1 year or more of follow-up. Time to 6-month confirmed disability progression (≥1-point increase in Patient-Determined Disease Steps [PDDS] scale score) and change in employment status were evaluated using Kaplan-Meier analysis. Participants were censored at last follow-up or at DMF discontinuation, whichever came first. Results: During the study, 725 US participants with RRMS had at least 1 year of DMF follow-up data, of whom most were female and White. At year 5, 69.9% (95% CI, 65.4%–73.9%) of these participants were free from 6-month confirmed disability progression, and 84.7% (95% CI, 78.6%–89.2%) were free from conversion to secondary progressive MS. Of 116 participants with data at baseline and year 5, most had stable or improved PDDS scale and Performance Scales scores over 5 years. Of 322 participants 62 years and younger and employed at the index survey, 66.0% (95% CI, 57.6%–73.1%) were free from a negative change in employment type over 5 years. Conclusions: Most US NARCOMS Registry participants treated up to 5 years with DMF remained free from 6-month confirmed disability progression and conversion to secondary progressive MS and had stable disability and employment status. These results support the long-term stability of disability and work-related outcomes with disease-modifying therapy.

Conscientiousness and deterioration in employment status in multiple sclerosis over 3 years

2020 ◽  
pp. 135245852094601
Author(s):  
Michael G Jaworski ◽  
Tom A Fuchs ◽  
Michael G Dwyer ◽  
Curtis Wojcik ◽  
Robert Zivadinov ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Employment Status ◽  
Cognitive Rehabilitation ◽  
Disease Status ◽  
Employee Relations ◽  
Full Time ◽  
Negative Work ◽  
Part Time ◽  
Work Events

Background: Physical and cognitive symptoms of multiple sclerosis (MS) correlate with unemployment cross-sectionally. Prospective studies, rarely published, have not accounted for personality traits such as Conscientiousness. Methods: In a 3-year study of 70 people with MS (PwMS) and 25 healthy controls (HCs), we evaluated employment status using online interviews capturing hours worked, negative work events, employee relations, and accommodations. Deteriorating employment status (DES) was defined as reduced employment (full-time to part-time or negative work events). In PwMS, we explored workplace accommodations, disclosure of disease status, and physical/psychological predictors of DES (e.g. Conscientiousness). Results: At follow-up, DES was 0% in HCs and 25.7% in MS, and 62.7% of work-stable PwMS used at least one work accommodation, most frequently, flexible hours. At baseline, DES-PwMS had lower education ( p = 0.009), lower Conscientiousness ( p < 0.001), more fatigue ( p = 0.033), and performed worse on Symbol Digit Modalities Test ( p = 0.013), Brief Visuospatial Memory Test—Revised ( p = 0.041), and Nine-Hole Peg Test ( p = 0.046) relative to work-stable. The model predicting DES was significant (χ2(7) = 30.936, p < 0.001) and baseline Conscientiousness accounted for more variance in DES ( p = 0.004) than other factors. Higher Conscientiousness PwMS were more likely to disclose their condition at work ( p = 0.038). Conclusion: Accommodations for low Conscientiousness, flexible hours, and physical/cognitive rehabilitation may prevent DES.

Employment status in people with relapsing multiple sclerosis from Argentina: Impact of disability and neuropsychological factors

Work ◽  
2021 ◽  
pp. 1-7
Author(s):  
Edgar Carnero Contentti ◽  
Pablo Adrián López ◽  
Juan Pablo Pettinicchi ◽  
Veronica Tkachuk ◽  
María Eugenia Balbuena ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Employment Status ◽  
Univariate Analysis ◽  
Depression Scale ◽  
Cross Sectional Study ◽  
Full Time ◽  
Cross Sectional ◽  
Neuropsychological Factors ◽  
Anxiety Depression ◽  
The Impact

BACKGROUND: Unemployment is common in people with multiple sclerosis (PwMS) and might be prevented if factors associated with work loss are identified. OBJECTIVE: We aimed to assess the impact of multiple sclerosis (MS) on employment status in a cohort of PwMS from Argentina and to evaluate their association with anxiety, depression, fatigue and disability. METHODS: A cross-sectional study was conducted to assess employment in PwMS using an anonymous, self-administered questionnaire, which also included the Hospital Anxiety and Depression Scale, Fatigue Severity Scale and Expanded Disability Status Scale. The data was compared between employed (full-time vs. part-time) vs. unemployed (looking for vs. not looking for work) PwMS. Univariate and multivariate models were designed to identify factors independently associated with unemployment. RESULTS: Among the 167 PwMS, 120 (71.6%, full-time = 65%) were employed, and 47 (28.4%, looking for work = 27.6%) were currently unemployed. Age, gender, and duration of disease were similar in both groups. Univariate analysis showed that anxiety, depression, fatigue and disability were significantly associated with unemployed PwMS. However, only disability (OR = 1.36 (1.08–1.70), p = 0.007) was independently associated with unemployment after applying multivariate analysis (logistic regression). CONCLUSION: Nearly one-third of PwMS from this sample in Argentina were unemployed. Neuropsychological factors and disability were associated with unemployment status.

The Politics of Part-Time Work: Gender, Employment Status, and Preferences for Redistribution

2020 ◽  
pp. 1-38
Author(s):  
David S. Pedulla ◽  
Michael J. Donnelly
Keyword(s):  
Employment Status ◽  
General Social Survey ◽  
The United States ◽  
Limited Attention ◽  
Full Time ◽  
Cross Sectional ◽  
Preferences For Redistribution ◽  
Time Work ◽  
Part Time ◽  
Part Time Work

Abstract The social and economic forces that shape attitudes toward the welfare state are of central concern to social scientists. Scholarship in this area has paid limited attention to how working part-time, the employment status of nearly 20% of the U.S. workforce, affects redistribution preferences. In this article, we theoretically develop and empirically test an argument about the ways that part-time work, and its relationship to gender, shape redistribution preferences. We articulate two gender-differentiated pathways—one material and one about threats to social status—through which part-time work and gender may jointly shape individuals’ preferences for redistribution. We test our argument using cross-sectional and panel data from the General Social Survey in the United States. We find that the positive relationship between part-time employment, compared to full-time employment, and redistribution preferences is stronger for men than for women. Indeed, we do not detect a relationship between part-time work and redistribution preferences among women. Our results provide support for a gendered relationship between part-time employment and redistribution preferences and demonstrate that both material and status-based mechanisms shape this association.

scholarly journals Surgically treated acromegaly patients have a similar quality of life whether controlled by surgery or requiring additional medical therapy (QuaLAT Study)

Pituitary ◽  
2021 ◽  
Author(s):  
Muhammad Fahad Arshad ◽  
Oluwafunto Ogunleye ◽  
Richard Ross ◽  
Miguel Debono
Keyword(s):  
Quality Of Life ◽  
Medical Treatment ◽  
Physical Component Score ◽  
Healthy Controls ◽  
Component Score ◽  
Post Surgery ◽  
Group 3 ◽  
Group 2 ◽  
Group 1

Abstract Purpose There is no consensus on quality of life (QOL) in patients with acromegaly requiring medical treatment after surgery compared with those achieving remission by surgery alone. Methods QuaLAT is a cross-sectional study comparing QOL in surgery-only treated acromegaly patients versus those requiring medical treatment post-surgery. Patients attending clinics were identified and divided into—Group 1: patients who had surgery only and were in biochemical remission, Group 2: all patients on medical treatment post-surgery, Group 3: patients from Group 2 with biochemical control. Participants were asked to fill three questionnaires; Acromegaly Quality of Life Questionnaire (ACROQOL), 36-Item Short Form Survey (SF36), and Fatigue Severity Scale (FSS). Results There were 32 patients in Group 1 and 25 in Group 2. There was no difference in QOL scores between groups 1 and 2, as measured by ACROQOL (mean difference [MD] = − 2.5, 95% CI − 16.6 to 11.6; p = 0.72), SF36v2 [Physical component score (PCS) MD = − 4.9, 95% CI − 10.9 to 1.2; p = 0.12; mental component score MD = − 3.0, 95% CI − 10.5 to 4.4; p = 0.44], or FSS (MD = − 0.004, 95% CI − 1.14 to 1.33; p = 0.1). Comparison between groups 1 and 3 however showed that PCS (and 3 subdomains) was significantly better in group 3 (MD = − 8.3, 95% CI − 14.8 to -1.8; p = 0.01). All three QOL scores were lower when compared with healthy controls. Conclusions Medical treatment not only achieves a QOL comparable to surgery, it may also be associated with better QOL in physical subdomains. When compared with healthy controls, QOL remains worse in treated acromegaly patients compared to controls.

scholarly journals Validation and application of health utilities index in Chinese subjects with down syndrome

2014 ◽  
Vol 12 (1) ◽  
Author(s):  
Winnie Ka Yan Mok ◽  
Wilfred Hing-Sang Wong ◽  
Gary Tsz Kin Mok ◽  
Yoyo Wing Yiu Chu ◽  
Frederick Ka Wing Ho ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Health Utilities Index ◽  
Health Utilities ◽  
Chinese Subjects

scholarly journals Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Lisa-Marie Ohle ◽  
David Ellenberger ◽  
Peter Flachenecker ◽  
Tim Friede ◽  
Judith Haas ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Sociodemographic Factors ◽  
Healthcare Research ◽  
Structure Design ◽  
Data Repository ◽  
Research Projects ◽  
Real World Data ◽  
Data Repositories ◽  
Term Data

AbstractIn 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR provides observational real-world data on long-term disease progression, sociodemographic factors, treatment and the healthcare status of people with MS. This paper aims to illustrate the framework of the GMSR. Structure, design and data quality processes as well as collaborations of the GMSR are presented. The registry’s dataset, status and results are discussed. As of 08 January 2021, 187 centres from different healthcare sectors participate in the GMSR. Following its infrastructure and dataset specification upgrades in 2014, more than 196,000 visits have been recorded relating to more than 33,000 persons with MS (PwMS). The GMSR enables monitoring of PwMS in Germany, supports scientific research projects, and collaborates with national and international MS data repositories and initiatives. With its recent pharmacovigilance extension, it aligns with EMA recommendations and helps to ensure early detection of therapy-related safety signals.

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