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

2018 ◽  
Vol 24 (14) ◽  
pp. 1892-1901 ◽  
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.

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

2018 ◽  
Vol 25 (13) ◽  
pp. 1791-1799 ◽  
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.

scholarly journals Validation of the NARCOMS Registry

2011 ◽  
Vol 13 (3) ◽  
pp. 114-120 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Myla Goldman
Keyword(s):  
Multiple Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Hand Function ◽  
Functional System ◽  
Research Committee ◽  
The North ◽  
Patient Reported ◽  
And Performance ◽  
Patient Reported Measures

Tremor secondary to multiple sclerosis (MS) can be severely disabling but remains understudied. The development of brief, acceptable patient-reported measures of tremor could facilitate further study. We aimed to assess the criterion and construct validity of the Tremor and Coordination Scale (TACS) used by the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Forty-four patients with MS completed the TACS and Performance Scales and underwent a neurologic examination (Expanded Disability Status Scale; EDSS) and evaluation with the Multiple Sclerosis Functional Composite (MSFC). We assessed criterion and construct validity with Spearman rank correlations between the TACS and the following measures: EDSS, Nine-Hole Peg Test (NHPT) of the MSFC, age, body-mass index (BMI), the hand function and mobility domains of the Performance Scales, and the Physical and Mental Composite Scores of the 36-item Short Form Health Status Survey (SF-36). The median (interquartile range; IQR) score on the TACS was 1 (0.5–2.0). The TACS correlated moderately with the cerebellar Functional System Score (FSS) (r = 0.51; 95% confidence interval [CI], 0.24–0.70) and with the NHPT (r = −0.51; 95% CI, −0.70 to −0.29). The TACS correlated with the hand (r = 0.60; 95% CI, 0.36–0.76) and mobility (r = 0.56; 95% CI, 0.31–0.73) domains of the Performance Scales. The TACS did not correlate significantly with age (r = −0.11; 95% CI, −0.40 to 0.19) or BMI (r = 0.15; 95% CI, −0.15 to 0.43). These findings support the criterion and construct validity of the TACS. Further evaluation is needed to establish the test-retest reliability of the scale and its responsiveness to change.

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

2015 ◽  
Vol 21 (5) ◽  
pp. 612-621 ◽  
Author(s):  
Louise Barrett ◽  
Stefan Cano ◽  
John Zajicek ◽  
Jeremy Hobart
Keyword(s):  
Multiple Sclerosis ◽  
Psychometric Properties ◽  
Measurement Theory ◽  
Hand Function ◽  
Measurement Range ◽  
Patient Reported Outcome ◽  
Group Differences ◽  
Patient Reported ◽  
Instrument Measuring ◽  
Type Ii Errors

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.

Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  
Keyword(s):  
Colorectal Surgery ◽  
Outcome Measures ◽  
Short Form ◽  
Wide Spectrum ◽  
Core Outcome Set ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Eortc Qlq

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.

scholarly journals Patient-reported outcome measures in community-acquired pneumonia: a systematic review of application and content validity

2019 ◽  
Vol 6 (1) ◽  
pp. e000398 ◽  
Author(s):  
Melanie Lloyd ◽  
Emily Callander ◽  
Amalia Karahalios ◽  
Lucy Desmond ◽  
Harin Karunajeewa
Keyword(s):  
Outcome Measures ◽  
Content Validity ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Community Acquired Pneumonia ◽  
Current Evidence ◽  
Measurement Instruments ◽  
Health Measurement ◽  
Patient Reported

IntroductionPatient-reported outcome measures (PROMs) are a vital component of patient-centred care. Community-acquired pneumonia (CAP) is a significant contributor to morbidity, mortality and health service costs globally, but there is a lack of consensus regarding PROMs for this condition.MethodsWe searched MEDLINE, EMBASE and Cochrane Collaboration for studies, both interventional and observational, of adult recovery from CAP that applied at least one validated PROM instrument and were published before 31 December 2017. The full text of included studies was examined and data collected on study design, PROM instruments applied, constructs examined and the demographic characteristics of the populations measured. For all CAP-specific PROM instruments identified, content validity was assessed using the COnsensus based Standards for selection of health Measurement INstruments guidelines (COSMIN).ResultsForty-two articles met the inclusion criteria and applied a total of 17 different PROM instruments including five (30%) classified as CAP specific, six (35%) as generic and six (35%) that measured functional performance or were specific to another disease. The 36-Item Short Form Survey (SF-36) was the most commonly used instrument (15 articles). Only one of 11 (9%) patient cohorts assessed using a CAP-specific instrument had a mean age ≥70 years. The CAP-Sym and CAP-BIQ questionnaires had sufficient content validity, though the quality of evidence for all CAP-specific instruments was rated as very low to low.DiscussionPROM instruments used to measure recovery from CAP are inconsistent in constructs measured and have frequently been developed and validated in highly selective patient samples that are not fully representative of the hospitalised CAP population. The overall content validity of all available CAP-specific instruments is unclear, particularly in the context of elderly hospitalised populations. Based on current evidence, generic health instruments are likely to be of greater value for measuring recovery from CAP in this group.

Short-form 6D assessment in compression module of the American College of Phlebology Patient Reported Outcome Venous Registry

2017 ◽  
Vol 33 (6) ◽  
pp. 425-429 ◽  
Author(s):  
Yung-Wei Chi ◽  
Blythe Durbin-Johnson ◽  
Marlin Schul
Keyword(s):  
Short Form ◽  
Patient Reported Outcome ◽  
Compression Stockings ◽  
Test Analysis ◽  
Linear Mixed Effects Model ◽  
Linear Mixed Effects ◽  
Time Period ◽  
Patient Reported ◽  
Registry Analysis

Objective The goal of this American College of Phlebology Patient Reported Outcome Venous Registry analysis was to examine the clinical efficacy of compression stockings using short-form 6D questionnaire (SF-6D). Method SF-6D scores were modeled over time using linear mixed effects model. Changes of SF-6D score from baseline to the last encounter were examined using a paired t-test. Analysis of variance was used to compare changes from baseline in SF-6D scores between C classifications. All analyses were conducted using SAS software, version 9.4 (SAS Institute, Cary NC). Results Baseline mean SF-6D score was 0.83 and at follow-up, 0.85. Mean SF-6D change was +0.02 points (P = .001) over an average time period of 5.5 months. Patients’ SF-6D scores were estimated to increase by +0.03 points (P = .005) per year of usage of compression stockings. SF-6D score changes across C classifications did not demonstrate significant differences (P = .265). Conclusion There was an improvement of SF-6D score in the registry participants who used circular knit compression stockings.

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

2018 ◽  
Vol 25 (4) ◽  
pp. 500-509 ◽  
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.

Patient-Reported Outcome following Metal-On-Metal Resurfacing of the Hip and Total Hip Replacement

2009 ◽  
Vol 19 (3) ◽  
pp. 245-250 ◽  
Author(s):  
David P. Hall ◽  
Del Srikantharajah ◽  
Raimond E. Anakwe ◽  
Paul Gaston ◽  
Colin R. Howie
Keyword(s):  
Total Hip Replacement ◽  
Hip Replacement ◽  
Short Form ◽  
Length Of Hospital Stay ◽  
Multivariate Regression Analysis ◽  
Hip Resurfacing ◽  
Patient Reported Outcome ◽  
Additional Patient ◽  
Total Hip ◽  
Patient Reported

Patient-reported outcome and satisfaction scores have become increasingly important in evaluating successful surgery. This case-matched control study compared patient-reported outcome and satisfaction data following hip resurfacing and total hip arthroplasty. Thirty-three consecutive patients selected for hip resurfacing were compared with 99 patients undergoing cemented total hip replacement (THR), matched for age, sex and pathology. Participants completed a Short-Form 12 Health Survey (SF-12) and Oxford Hip Score questionnaire preoperatively and 6 months post operatively with an additional patient satisfaction questionnaire. There was no difference in length of hospital stay. While both groups reported improved outcome scores, multivariate regression analysis did not demonstrate any significant benefit for one group over the other. Both groups reported high levels of satisfaction, which tended to be better in patients undergoing hip resurfacing.

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