Lending a hand: Can DASH items help ABILHAND improve manual ability measurement in multiple sclerosis?

Background: Our examination in multiple sclerosis (MS) of the ABILHAND, a patient-reported outcome (PRO) instrument measuring manual ability, identified limited measurement range and precision. These deficiencies could lead to type II errors in clinical trials. Objectives: This paper aims to determine if ABILHAND’s measurement performance in MS can be improved by adding relevant items from the Disabilities of the Arm, Shoulder and Hand scale (DASH). Methods: The 23-item ABILHAND and 30-item DASH were administered to 461 people with MS. Data from the ABILHAND were combined with 16 DASH items to create a 39-item scale (AD-39). Using Rasch Measurement Theory methods, we compared the psychometric properties of AD-39 with ABILHAND. Results: Data were analysed from 300 people. AD-39 performed robustly as a measure and had greater measurement range, lower floor and ceiling effects, and higher reliability (person separation index 0.97) than ABILHAND. Surprisingly, AD-39 appeared no better than ABILHAND at detecting group differences in self-reported hand function. Conclusion: Despite improving some psychometric properties, adding 16 DASH items to the ABILHAND did not improve its measurement performance to the degree expected. Our explanations for this anomaly emphasise the importance of evidence-based, conceptually driven scale modifications guided by hypothesis testing psychometric methods.

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Development of the Arm Function in Multiple Sclerosis Questionnaire-Short Form (AMSQ-SF): A static 10-item version

Multiple Sclerosis Journal ◽

10.1177/1352458518808197 ◽

2018 ◽

Vol 24 (14) ◽

pp. 1892-1901 ◽

Cited By ~ 2

Author(s):

Michiel AJ Luijten ◽

Iris Eekhout ◽

Marie D’Hooghe ◽

Bernard MJ Uitdehaag ◽

Lidwine B Mokkink

Keyword(s):

Multiple Sclerosis ◽

Short Form ◽

Hand Function ◽

Patient Reported Outcome ◽

Full Length ◽

Optimal Test ◽

Computerized Adaptive Test ◽

Graded Response ◽

Patient Reported ◽

Arm Function

Background: Assessing arm and hand function of multiple sclerosis (MS) patients is important as impaired functioning may impact daily activities and reduce quality of life. Objective: A short-form of the Arm Function in Multiple Sclerosis Questionnaire (AMSQ), a recently developed patient-reported outcome measure containing 31 items, is developed to allow non-adaptive application. Methods: Complete data from 690 patients with MS, recruited via outpatient clinics, a residential center or via a Dutch website aimed at MS patients, were included in the analyses. A graded response model was fit to these data to estimate item response theory (IRT) parameters, which were used to perform post hoc computerized adaptive test (CAT) simulations with a cutoff standard error of measurement (SEM) of 0.32. The optimal test length was determined by the correlation between the static short-form and full-length theta, the mean SEM, and the amount of patients reaching a satisfactory SEM in CAT simulations. Results and Conclusion: Based on five selection criteria (i.e. discrimination parameters, total information, times selected in CAT simulations, raw item means, and item content), 10 items were selected for inclusion in the short-form. The score on the final 10-item short-form correlated strongly with the full-length AMSQ and provided reliable ability estimations, indicating its usefulness instrument in research and clinical settings.

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Psychometric properties of a patient‐reported outcome set in acute stroke patients

Brain and Behavior ◽

10.1002/brb3.2249 ◽

2021 ◽

Author(s):

Rebecca Philipp ◽

Lisa Lebherz ◽

Götz Thomalla ◽

Martin Härter ◽

Hannes Appelbohm ◽

...

Keyword(s):

Acute Stroke ◽

Psychometric Properties ◽

Patient Reported Outcome ◽

Stroke Patients ◽

Outcome Set ◽

Patient Reported

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Validity of the French version of Catquest-9SF and use of an electronic notepad for entering patient-reported outcome measures

Eye and Vision ◽

10.1186/s40662-021-00233-7 ◽

2021 ◽

Vol 8 (1) ◽

Author(s):

Gregory Katz ◽

Alexandra Rouquette ◽

François Lignereux ◽

Thierry Mourgues ◽

Michel Weber ◽

...

Keyword(s):

Cataract Surgery ◽

Psychometric Properties ◽

Rasch Analysis ◽

Item Difficulty ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Good Precision ◽

French Version ◽

Patient Reported ◽

Before And After

Abstract Background The Catquest-9SF questionnaire is a patient reported outcome measure that quantifies the visual benefits from cataract surgery. The purpose of this study was to translate and adapt the Catquest-9SF questionnaire for France, to assess its psychometric properties via Rasch analysis, and to assess its validity when completed using an electronic notepad. Methods The Catquest-9SF questionnaire was translated following the guidelines of the International Society for Pharmacoeconomics and Outcomes Research. Catquest-9SF and clinical data were collected from patients before and after routine cataract surgery. All questionnaire data were collected via an electronic notepad. Rasch analysis was performed to assess psychometric properties, and sensitivity to change was analysed for patients with complete paired pre- and post-operative questionnaires. Results A complete filled-in preoperative questionnaire was obtained for 848 patients. Rasch analysis showed good precision (person separation: 2.32, person reliability: 0.84), ordered category probability curves, no item misfit, and unidimensionality. The respondents were slightly more able than the level of item difficulty (targeting: −1.12 logits). Sensitivity was analysed on 211 paired questionnaires, and the postoperative questionnaires showed a clear ceiling effect. The effect size was 2.6. The use of an electronic notepad for completing the questionnaire worked out very well after some adjustments. Conclusions The French version of Catquest-9SF has good psychometric properties and is suitable for use in French-speaking patients. The use of the Catquest-9SF questionnaire in an electronic format showed good validity.

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

Multiple Sclerosis Journal ◽

10.1177/1352458518807076 ◽

2018 ◽

Vol 25 (4) ◽

pp. 500-509 ◽

Cited By ~ 2

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.

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Patient reported outcome measures of upper limb function in multiple sclerosis: A critical overview

Multiple Sclerosis Journal ◽

10.1177/1352458518809294 ◽

2018 ◽

Vol 24 (14) ◽

pp. 1792-1794 ◽

Cited By ~ 2

Author(s):

Ilse Lamers ◽

Peter Feys

Keyword(s):

Multiple Sclerosis ◽

Outcome Measures ◽

Upper Limb ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Limb Function ◽

Upper Limb Function ◽

Patient Reported ◽

Critical Overview

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

Multiple Sclerosis Journal ◽

10.1177/1352458518810159 ◽

2018 ◽

Vol 25 (13) ◽

pp. 1791-1799 ◽

Cited By ~ 1

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.

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

Multiple Sclerosis Journal ◽

10.1177/1352458514529173 ◽

2014 ◽

Vol 20 (12) ◽

pp. 1616-1623 ◽

Cited By ~ 4

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.

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