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.

Relationship of Preoperative Patient-Reported Outcome Measures (PROMs) to Postoperative Success in End-Stage Ankle Arthritis

2019 ◽  
Vol 41 (3) ◽  
pp. 253-258 ◽  
Author(s):  
Feras J. Waly ◽  
Eng Meng Nicholas Yeo ◽  
Kevin J. Wing ◽  
Murray J. Penner ◽  
Andrea Veljkovic ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Ankle Arthritis ◽  
Ankle Osteoarthritis ◽  
Sf 36 ◽  
Patient Reported ◽  
End Stage ◽  
Preoperative Patient

Background: Ankle osteoarthritis is a significant cause of pain and disability. Despite the effectiveness of treatments, a subset of patients remains with persistent pain and functional limitations. The purpose of this study was to use preoperative patient-reported outcome measures to predict which ankle osteoarthritis patients would be most likely to experience postoperative improvements in functional outcomes. Methods: A retrospective analysis of prospectively collected data was used to evaluate 427 patients with end-stage ankle arthritis with 5-year follow-up. Demographics, comorbidities, Ankle Osteoarthritis Scale (AOS), Ankle Arthritis Score (AAS), and the physical and mental component scores of the Short Form–36 (SF-36 Physical Components Score [PCS] and Mental Components Score [MCS]) were collected. The minimal clinically important difference (MCID) was then calculated. Receiver operating characteristic (ROC) analysis was used to choose the optimal threshold values of preoperative patient-reported outcome measure and assess the prediction performance. Results: Patients who scored worst at preoperative baseline made the greatest gains in function and pain relief, and they had a high chance of achieving MCID following surgical treatment. ROC curves demonstrated that preoperative AOS, AAS, and SF-36 PCS and MCS scores were predictive of postoperative improvements in physical and mental function. Patients with preoperative AOS score above 45.7 had an 83% probability of achieving an MCID (AUC = 0.67). Similarly, patients with a preoperative AAS score above 25.7 had a 78% probability of achieving an MCID (AUC = 0.63). Patients with a preoperative SF-36 PCS score below 31 had a 62% probability of achieving an MCID (AUC = 0.64). Patients with a preoperative SF-36 MCS below 52.7 had a 47% probability of achieving an MCID (AUC = 0.89). MCIDs for AOS, AAS, SF3-36 PCS, and SF-36 MCS score changes were 12.4, 10.0, 6.43, and 8.1, respectively. Conclusion: Preoperative patient-reported outcomes measures could predict postoperative improvement in ankle arthritis patients. The results of this study may be used to facilitate discussion between physicians and patients regarding the expected benefit of surgery. Level of Evidence: Level III, prognostic comparative study.

scholarly journals Use of Computerized Adaptive Testing to Develop More Concise Patient-Reported Outcome Measures

2020 ◽  
Vol 5 (1) ◽  
pp. e0052
Author(s):  
Liam T. Kane ◽  
Surena Namdari ◽  
Otho R. Plummer ◽  
Pedro Beredjiklian ◽  
Alexander Vaccaro ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Computerized Adaptive Testing ◽  
Patient Reported Outcome Measures ◽  
Adaptive Testing ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades

RMD Open ◽  
2021 ◽  
Vol 7 (2) ◽  
pp. e001707
Author(s):  
Ayşe A Küçükdeveci ◽  
Atilla H Elhan ◽  
Beyza D Erdoğan ◽  
Şehim Kutlay ◽  
Derya Gökmen ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Outcome Measures ◽  
Physical Functioning ◽  
Short Form ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Personal Factors ◽  
Sf 36 ◽  
Patient Reported ◽  
Psychometric Evidence

IntroductionThe importance of patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA) clinical studies has been recognised for many years. The current study aims to describe the RA PROMs used over the past 20 years, and their performance metrics, to underpin appropriate tool selection.MethodsThe study included a systematic search for PROMs that have been in use over the period 2000–2019, with detailed documentation of their psychometric properties, and a user-friendly presentation of the extensive evidence base.Results125 PROMs were identified with psychometric evidence available. The domains of pain, fatigue, emotional functions, mobility, physical functioning and work dominated, with self-efficacy and coping as personal factors. Domains such as stiffness and sleep were poorly served. The most frequently used PROMs included the Health Assessment Questionnaire Disability Index (HAQ), the Short Form 36 (SF-36), the EuroQoL and the Modified HAQ which, between them, appeared in more than 3500 papers. Strong psychometric evidence was found for the HAQ, and the SF-36 Physical Functioning and Vitality (fatigue) domains. Otherwise, all domains except stiffness, sleep, education and health utility, had at least one PROM with moderate level of psychometric evidence.ConclusionThere is a broad range of PROMs for measuring RA outcomes, but the quality of psychometric evidence varies widely. This work identifies gaps in key RA domains according to the biopsychosocial model.

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.

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.

scholarly journals Feasibility of Collecting Multiple Patient-Reported Outcome Measures Alongside the Dutch Arthroplasty Register

2019 ◽  
Vol 7 (4) ◽  
pp. 484-492
Author(s):  
Claire Tilbury ◽  
Claudia S Leichtenberg ◽  
Bart L Kaptein ◽  
Lennard A Koster ◽  
Suzan H M Verdegaal ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Short Form ◽  
Response Rates ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Participation Rates ◽  
Arthroplasty Register ◽  
Patient Reported ◽  
Lost To Follow Up

Background: Compliance rates with patient-reported outcome measures (PROMs) collected alongside arthroplasty registries vary in the literature. We described the feasibility of a routinely collected set PROMs alongside the Dutch Arthroplasty Register. Methods: The longitudinal Leiden Orthopaedics Outcomes of OsteoArthritis Study is a multicenter (7 hospitals), observational study including patients undergoing total hip or total knee arthroplasty (THA or TKA). A set of PROMs: Short Form-12, EuroQol 5 Dimensions, Hip/Knee injury and Osteoarthritis Outcome Score, Oxford Hip/Knee Score was collected preoperatively and at 6, 12, 24 months, and every 2 years thereafter. Participation rates and response rates were recorded. Results: Between June 2012 and December 2014, 1796 THA and 1636 TKA patients were invited, of whom 1043 THA (58%; mean age 68 years [standard deviation, SD: 10]) and 970 TKA patients (59%; mean age 71 years [SD 9.5]) participated in the study. At 6 months, 35 THA/38 TKA patients were lost to follow-up. Response rates were 90% for THA (898/1000) and 89% for TKA (827/932) participants. At 1 and 2 years, 8 and 18 THA and 17 and 11 TKA patients were lost to follow-up, respectively. The response rates among those eligible were 87% (866/992) and 84% (812/972) for THA and 84% (771/917) and 83% (756/906) for TKA patients, respectively. The 2-year questionnaire was completed by 78.5% of the included THA patients and by 77.9% of the included TKA patients. Conclusions: About 60% of patients undergoing THA or TKA complete PROMs preoperatively, with more than 80% returning follow-up PROMs. To increase the participation rates, more efforts concerning the initial recruitment of patients are needed.

Patient-reported outcome measures after surgery for an acetabular fracture

2018 ◽  
Vol 100-B (5) ◽  
pp. 640-645 ◽  
Author(s):  
B. Frietman ◽  
J. Biert ◽  
M. J. R. Edwards
Keyword(s):  
Outcome Measures ◽  
Hip Joint ◽  
Acetabular Fracture ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Ct Scans ◽  
Sf 36 ◽  
Patient Reported ◽  
Post Traumatic

Aims The aim of this study was to record the incidence of post-traumatic osteoarthritis (OA), the need for total hip arthroplasty (THA), and patient-reported outcome measures (PROMS) after surgery for a fracture of the acetabulum, in our centre. Patients and Methods All patients who underwent surgery for an acetabular fracture between 2004 and 2014 were included. Patients completed the 36-Item Short Form Health Survey (SF-36) and the modified Harris Hip Score (mHHS) questionnaires. A retrospective chart and radiographic review was performed on all patients. CT scans were used to assess the classification of the fracture and the quality of reduction. Results A total of 220 patients were included, of which 55 (25%) developed post-traumatic OA and 33 (15%) underwent THA. A total of 164 patients completed both questionnaires. At a mean follow-up of six years (2 to 10), the mean SF-36 score for patients with a preserved hip joint was higher on role limitations due to physical health problems than for those with OA or those who underwent THA. In the dimension of bodily pain, patients with OA had a significantly better score than those who underwent THA. Patients with a preserved hip joint had a significantly better score on the function scale of the mHHS and a better total score than those with OA or who underwent THA. Conclusion Of the patients who were treated surgically for an acetabular fracture (with a mean follow-up of six years), 15% underwent THA at a mean of 2.75 years postoperatively. Patients with a THA had a worse functional outcome than those who retain their native hip joint. We recommend using PROMS and CT scans when reviewing these patients. Cite this article: Bone Joint J 2018;100-B:640–5.

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