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 Agreement Between Patient and Proxy Assessments of Health-Related Quality of Life After Stroke Using the EQ-5D and Health Utilities Index

Stroke ◽  
2004 ◽  
Vol 35 (2) ◽  
pp. 607-612 ◽  
Author(s):  
A. Simon Pickard ◽  
Jeffrey A. Johnson ◽  
David H. Feeny ◽  
Ashfaq Shuaib ◽  
K.C. Carriere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Health Utilities Index ◽  
Health Utilities ◽  
Related Quality ◽  
Health Related

Validation of the preference-based multiple sclerosis index

2018 ◽  
Vol 25 (11) ◽  
pp. 1496-1505 ◽  
Author(s):  
Ayse Kuspinar ◽  
Nancy E Mayo
Keyword(s):  
Multiple Sclerosis ◽  
Factor Analysis ◽  
Convergent Validity ◽  
Correlation Coefficients ◽  
Structural Validity ◽  
Related Quality ◽  
Health Related ◽  
Secondary Endpoints ◽  
Study Support ◽  
Generic Measures

Background: Preference-based measures of health-related quality of life (HRQL) are used as primary or secondary endpoints in multiple sclerosis (MS) research. Objective: The purpose of this paper was to evaluate the structural, convergent, and known-groups validity of the preference-based multiple sclerosis index (PBMSI) of HRQL in people with MS. Methods: Participants were recruited from three MS clinics in Montreal. Structural validity was assessed using polychoric correlation coefficients and factor analysis. To assess convergent validity, hypotheses were formulated about the strength of correlations between the PBMSI and other HRQL measures. Known-groups validity was assessed against different measures of disability. Results: The average age of the sample was 46 and 77% were women. Factor analysis supported the structural validity of the PBMSI; the items collectively were measuring one underlying construct. The PBMSI showed convergent validity against generic measures of HRQL, and known-groups validity between persons with different levels of disability. Conclusion: The results of this study support the construct validity of the PBMSI as an outcome measure of HRQL in MS. The PBMSI overcomes limitations observed with currently used HRQL measures in MS and may be used to contrast different interventions for people with MS.

Evaluating Health-related Quality of Life Among Tuberous Sclerosis Complex Individuals Using Health Utilities Index: a Local Study and Comparison With Existing Data

2021 ◽  
Author(s):  
Dorothy Chi-Ching Chan ◽  
Lorraine Lok-Wing Chiang ◽  
William Ching-Yuen Chu ◽  
Coey Cheuk-Yee Chung ◽  
Nicole Wing-Lam Hon ◽  
...  
Keyword(s):  
Behavioral Problems ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Health Related Quality ◽  
Health Utilities Index ◽  
Health Utilities ◽  
Related Quality ◽  
Health Related ◽  
Existing Data

Abstract Background:Tuberous sclerosis complex (TSC) is a rare autosomal dominant disorder characterized by benign tumor growth in multiple organs, which may cause significant negative impact on patients’ health-related quality of life (HRQoL). Since HRQoL studies in Asian TSC population are scarce, we aim to evaluate the HRQoL of our local TSC patients, who are mainly ethical Chinese, so as to provide a holistic view and information for better understanding of TSC patients in this part of the world. Methods:HUI-Ch is a validated Chinese multiple-choice questionnaire for scoring Health Utilities Index Mark 2 (HUI2) and Health Utilities Index Mark 3 (HUI3). It was used to assess HRQoL of TSC individuals in Hong Kong. Proxy-data on socio-demographics and common chronic health conditions for TSC patients were collected. Data analyses involved multiple imputation with two-sample t-test, Pearson correlation and multiple regression to predict variations in HRQoL in relation to different factors. Data was compared with existing data on HUI of other disease entities.Results:Of 27 patients in the study sample, mean HUI2 and HUI3 scores were 0.64 and 0.50 respectively (1 = perfect health, 0 = death). 81.5% and 77.8% of TSC patients belonged to the “severe” disability category on HUI2 and HUI3, which were higher than the proportion of Down syndrome patients (60.0% and 72.0%). Behavioral problems on HUI2 and attention deficit hyperactivity disorder (ADHD) on HUI3 were statistically significant predictors (both p<0.01) of poorer HRQoL. Patients with behavioral problems, compared to those without, had significantly lower scores in cognition (0.88 vs 0.98, p<0.01) and self-care (0.96 vs 1.00, p<0.01) on HUI2. Patients with ADHD, compared to those without, had significantly lower scores in cognition (0.71 vs 0.95, p<0.001) and speech (0.87 vs 0.95, p<0.05) on HUI3. Patients with multiple chronic health conditions (6 or above) had lower HUI2 and HUI3 scores.Conclusions:Local TSC patients have poorer HRQoL than Down syndrome and other chronic conditions. Findings from our study can serve as a baseline for evaluating management outcome in TSC patients with similar cultural backgrounds. Further HRQoL studies can be conducted in other regions to improve the assessment accuracy of these data collected.

The measurement of long-term health-related quality of life after injury: comparison of EQ-5D and the health utilities index

2010 ◽  
Vol 16 (3) ◽  
pp. 147-153 ◽  
Author(s):  
S. Polinder ◽  
J. A. Haagsma ◽  
G. Bonsel ◽  
M.-L. Essink-Bot ◽  
H. Toet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Health Utilities Index ◽  
Health Utilities ◽  
Related Quality ◽  
Health Related

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 &gt; 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.

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 Reliability and acceptability of the Multiple Sclerosis Quality of Life-29 questionnaire in an English-speaking cohort

2018 ◽  
Vol 25 (11) ◽  
pp. 1539-1542
Author(s):  
Georgina Baker ◽  
Krishnan Padmakumari Sivaraman Nair ◽  
Kathleen Baster ◽  
Rosalba Rosato ◽  
Alessandra Solari
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Life Questionnaire ◽  
Good Test ◽  
Quality Of Life Questionnaire ◽  
Related Quality ◽  
English Speaking

Background: Multiple Sclerosis Quality-of-Life Questionnaire-54 (MSQoL-54) is a disease-specific instrument for assessing health-related quality of life (HRQoL). Due to the number of items, the time taken to complete it is long. A shorter 29-item version, Multiple Sclerosis Quality-of-Life Questionnaire-29 (MSQoL-29) is yet to be evaluated in English. Objective: To assess reliability and acceptability of English version of MSQoL-29. Methods: Among 100 participants with MS who first completed both MSQoL-54 and MSQoL-29, 91 completed MSQoL-29 after 4–8 weeks. We looked for internal consistency (Cronbach’s alpha), acceptability, reliability (intraclass correlation coefficients (ICCs)) and agreement (Bland–Altman plots). Results: ICCs were strongly positive between MSQoL-54 and MSQoL-29 (Physical Health Composite (PHC) –ICC = 0.914, confidence interval (CI) = 0.872–0.942; Mental Health Composite (MHC) – ICC = 0.875, CI = 0.814–0.916) and between the two MSQoL-29 (PHC – ICC = 0.970, CI = 0.955–0.980; MHC – ICC = 0.937, CI = 0.904–0.958). On Bland–Altman plots, the MSQoL-29 scores of 95% of participants during two visits were within the limits of agreement (LOAs). Time taken to complete MSQoL-29 was 7.2 ± 2.9 minutes and MSQoL-54 was 19.79 ± 5.4 minutes ( p = 0.0001). Conclusion: MSQoL-29 has good test–retest reliability in English-speaking population and was quicker to complete.

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