Validation of the preference-based multiple sclerosis index

2018 ◽  
Vol 25 (11) ◽  
pp. 1496-1505 ◽  
Author(s):  
Ayse Kuspinar ◽  
Nancy E Mayo

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.

2018 ◽  
Vol 21 (2) ◽  
pp. 84-94 ◽  
Author(s):  
Cory E Noble ◽  
Lesley M Wiseman-Orr ◽  
Marian E Scott ◽  
Andrea M Nolan ◽  
Jacky Reid

Objectives The objective of this study was to develop a valid, reliable, web-based generic feline health-related quality-of-life (HRQoL) questionnaire instrument to measure the affective impact of chronic disease. Methods A large initial item pool, obtained through interviews with cat owners, was reduced using predetermined criteria, survey scores for relevance and clarity, and the ability of individual items to discriminate between healthy and sick cats when owners completed a prototype questionnaire. Using these data, factor analysis was used to derive a scoring algorithm and provide evidence for factorial validity. Validity was demonstrated further in a field trial using a ‘known groups’ approach (sick vs healthy cats will have a different HRQoL profile, and the HRQoL profile of cats will deteriorate as comorbidities increase). Test–retest reliability was assessed using intra-class correlation coefficients (ICCs). Results In total, 165 items were reduced to 20 and, on the basis of a factor analysis that explained 72.3% of the variation in scores input by 71 owners of 30 healthy and 41 sick cats using the prototype, these were allocated to three domains (vitality, comfort and emotional wellbeing [EWB]) with a scoring algorithm derived using item loadings. Subsequently, the owners of 36 healthy and 58 sick cats completed one or two (n = 48) assessments. Median scores (healthy vs sick) for all domains were significantly different ( P <0.001), 78% of cats were correctly classified as healthy or sick and for comorbidities the correlation coefficients were moderate (vitality 0.64; comfort 0.63; EWB 0.50). Test–retest reliability was good (ICC vitality 0.635; comfort 0.716; EWB 0.853). Conclusions and relevance This study provides initial evidence for the validity and reliability of a novel HRQoL instrument to aid the assessment and management of chronic diseases of cats.


2019 ◽  
Vol 26 (9) ◽  
pp. 1102-1110 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Brenden Dufault ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
...  

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.


2009 ◽  
Vol 15 (10) ◽  
pp. 1239-1249 ◽  
Author(s):  
JM Wesson ◽  
JA Cooper ◽  
LS Jehle ◽  
SN Lockhart ◽  
K. Draney ◽  
...  

Addressing health-related quality of life is considered a desirable component of routine care for patients with multiple sclerosis. However, use of available health-related quality of life surveys is not part of routine multiple sclerosis care, possibly due to administration, scoring, and interpretation challenges presented by available questionnaires. The 25-item Functional Index for Living with Multiple Sclerosis (FILMS) questionnaire was developed and validated to allow providers to monitor and easily apply health-related quality of life information to the patient encounter. The development and pilot test processes and the results of the validation study are reported here. Convergent validity, internal consistency reliability, and test—retest reproducibility were evaluated. Strong correlations of Functional Index for Living with Multiple Sclerosis subscales with control questionnaires were demonstrated by Pearson’s correlation coefficients from 0.73 to 0.88. Internal consistency reliabilities ranged from 0.80 to 0.90, demonstrating that items were grouped into the appropriate subscale domains and that the subscale domains and the questionnaire as a whole exhibited good directionality. Test—retest reproducibility was 0.91.


2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.


2013 ◽  
Vol 20 (2) ◽  
pp. 253-257 ◽  
Author(s):  
Mariko Kita ◽  
Robert J Fox ◽  
J Theodore Phillips ◽  
Michael Hutchinson ◽  
Eva Havrdova ◽  
...  

Multiple sclerosis (MS) has a significant impact on health-related quality of life (HRQoL) with symptoms adversely affecting many aspects of everyday living. BG-12 (dimethyl fumarate) demonstrated significant efficacy in the phase III studies DEFINE and CONFIRM in patients with relapsing–remitting MS. In CONFIRM, HRQoL was worse in patients with greater disability at baseline, and who relapsed during the study, and improved with BG-12 treatment. Mean Short Form-36 Physical Component Summary scores for BG-12 increased over 2 years and scores for placebo decreased. Coupled with clinical and neuroradiological benefits, these HRQoL results further support BG-12 as an effective oral treatment for relapsing MS.


Physiotherapy ◽  
2016 ◽  
Vol 102 ◽  
pp. e226-e227
Author(s):  
S.-J. Ryan ◽  
A. Marcar ◽  
P. Stone ◽  
K. Garikipati ◽  
R. Kuisma ◽  
...  

1995 ◽  
Vol 4 (3) ◽  
pp. 187-206 ◽  
Author(s):  
B. G. Vickrey ◽  
R. D. Hays ◽  
R. Harooni ◽  
L. W. Myers ◽  
G. W. Ellison

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