Appraisal of Candidate Instruments for Assessment of the Physical Function Domain in Patients with Psoriatic Arthritis

2020 ◽  
Vol 48 (1) ◽  
pp. 58-66 ◽  
Author(s):  
Ying Ying Leung ◽  
Ana-Maria Orbai ◽  
Alexis Ogdie ◽  
Pil Hojgaard ◽  
Richard Holland ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Physical Function ◽  
Outcome Measures ◽  
Physical Functioning ◽  
Working Group ◽  
Short Form ◽  
Outcome Measurement ◽  
Patient Reported Outcome Measures ◽  
Measurement Information ◽  
Patient Reported

Objective.Numerous patient-reported outcome measures (PROM) exist for the measurement of physical function for psoriatic arthritis (PsA), but only a few are validated comprehensively. The objective of this project was to prioritize PROM for measuring physical function for potential incorporation into a standardized outcome measurement set for PsA.Methods.A working group of 13 members including 2 patient research partners was formed. PROM measuring physical function in PsA were identified through a systematic literature review and recommendations by the working group. The rationale for inclusion and exclusion from the original list of existing PROM was thoroughly discussed and 2 rounds of Delphi exercises were conducted to achieve consensus.Results.Twelve PROM were reviewed and discussed. Six PROM were prioritized: Health Assessment Questionnaire (HAQ) and 4 modifications (HAQ-Disability Index, HAQ-Spondyloarthritis, modified HAQ, multidimensional HAQ), Medical Outcomes Study 36-item Short Form survey physical functioning domain, and the Patient-Reported Outcomes Measurement Information System (PROMIS) physical functioning module.Conclusion.Through discussion and Delphi exercises, we achieved consensus to prioritize 6 physical function PROM for PsA. These 6 PROM will undergo further appraisal using the Outcome Measures in Rheumatology (OMERACT) Filter 2.1.

scholarly journals Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody–associated Vasculitis Using the OMERACT Process

2015 ◽  
Vol 42 (11) ◽  
pp. 2204-2209 ◽  
Author(s):  
Joanna C. Robson ◽  
Nataliya Milman ◽  
Gunnar Tomasson ◽  
Jill Dawson ◽  
Peter F. Cronholm ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Outcome Measures ◽  
Working Group ◽  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Antineutrophil Cytoplasmic Antibody ◽  
International Classification Of Functioning ◽  
Measurement Information ◽  
Core Set ◽  
Patient Reported

Objective.Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group has been at the forefront of outcome development in the field and has achieved OMERACT endorsement of a core set of outcomes for AAV. Patients with AAV report as important some manifestations of disease not routinely collected through physician-completed outcome tools; and they rate common manifestations differently from investigators. The core set includes the domain of patient-reported outcomes (PRO). However, PRO currently used in clinical trials of AAV do not fully characterize patients’ perspectives on their burden of disease. The OMERACT vasculitis working group is addressing the unmet needs for PRO in AAV.Methods.Current activities of the working group include (1) evaluating the feasibility and construct validity of instruments within the PROMIS (Patient-Reported Outcome Measurement Information System) to record components of the disease experience among patients with AAV; (2) creating a disease-specific PRO measure for AAV; and (3) applying The International Classification of Functioning, Disability and Health to examine the scope of outcome measures used in AAV.Results.The working group has developed a comprehensive research strategy, organized an investigative team, included patient research partners, obtained peer-reviewed funding, and is using a considerable research infrastructure to complete these interrelated projects to develop evidence-based validated outcome instruments that meet the OMERACT filter of truth, discrimination, and feasibility.Conclusion.The OMERACT vasculitis working group is on schedule to achieve its goals of developing validated PRO for use in clinical trials of AAV.

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.

scholarly journals Measuring Self-Reported Cancer-Related Cognitive Impairment: Recommendations from the Cancer Neuroscience Initiative Working Group

2021 ◽  
Author(s):  
Ashley M Henneghan ◽  
Kathleen Van Dyk ◽  
Tara Kaufmann ◽  
Rebecca Harrison ◽  
Christopher Gibbons ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Working Group ◽  
Short Form ◽  
Outcome Measurement ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Scientific Rigor ◽  
Increased Risk ◽  
Patient Reported ◽  
Measurement Information System

Abstract Cancer and its treatments are associated with increased risk for cancer-related cognitive impairment (CRCI). Methods and measures used to study and assess self-reported CRCI (sr-CRCI), however, remain diverse, resulting in heterogeneity across studies. The Patient-Reported Outcomes Working Group has been formed to promote homogeneity in the methods used to study sr-CRCI. In this report, using a psychometric taxonomy, we inventory and appraise instruments used in research to measure sr-CRCI, and we consider advances in patient-reported outcome methodology. Given its psychometric properties, we recommend the Patient-Reported Outcome Measurement Information System Cognitive Function Short Form 8a for measurement of sr-CRCI in cancer patients and survivors, at a minimum, in order to increase scientific rigor and progress in addressing CRCI.

Preoperative Opioid Use in Patients Undergoing Common Hand Surgeries

Hand ◽  
2021 ◽  
pp. 155894472097412
Author(s):  
Ali Aneizi ◽  
Dominique Gelmann ◽  
Dominic J. Ventimiglia ◽  
Patrick M. J. Sajak ◽  
Vidushan Nadarajah ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Hand Surgery ◽  
Patient Characteristics ◽  
Patient Reported Outcome Measures ◽  
Pain Scale ◽  
Patient Reported Outcome ◽  
Measurement Information ◽  
Opioid Use ◽  
Patient Reported ◽  
Opioid Users

Background: The objectives of this study were to determine the baseline patient characteristics associated with preoperative opioid use and to establish whether preoperative opioid use is associated with baseline patient-reported outcome measures in patients undergoing common hand surgeries. Methods: Patients undergoing common hand surgeries from 2015 to 2018 were retrospectively reviewed from a prospective orthopedic registry at a single academic institution. Medical records were reviewed to determine whether patients were opioid users versus nonusers. On enrollment in the registry, patients completed 6 Patient-Reported Outcomes Measurement Information System (PROMIS) domains (Physical Function, Pain Interference, Fatigue, Social Satisfaction, Anxiety, and Depression), the Brief Michigan Hand Questionnaire (BMHQ), a surgical expectations questionnaire, and Numeric Pain Scale (NPS). Statistical analysis included multivariable regression to determine whether preoperative opioid use was associated with patient characteristics and preoperative scores on patient-reported outcome measures. Results: After controlling for covariates, an analysis of 353 patients (opioid users, n = 122; nonusers, n = 231) showed that preoperative opioid use was associated with higher American Society of Anesthesiologists class (odds ratio [OR], 2.88), current smoking (OR, 1.91), and lower body mass index (OR, 0.95). Preoperative opioid use was also associated with significantly worse baseline PROMIS scores across 6 domains, lower BMHQ scores, and NPS hand scores. Conclusions: Preoperative opioid use is common in hand surgery patients with a rate of 35%. Preoperative opioid use is associated with multiple baseline patient characteristics and is predictive of worse baseline scores on patient-reported outcome measures. Future studies should determine whether such associations persist in the postoperative setting between opioid users and nonusers.

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.

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 OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis

2017 ◽  
Vol 44 (10) ◽  
pp. 1529-1535 ◽  
Author(s):  
Joanna C. Robson ◽  
Gunnar Tomasson ◽  
Nataliya Milman ◽  
Sue Ashdown ◽  
Annelies Boonen ◽  
...  
Keyword(s):  
Physical Functioning ◽  
Working Group ◽  
Patient Reported Outcomes ◽  
Controlled Trial ◽  
Antineutrophil Cytoplasmic Antibody ◽  
Pain Interference ◽  
Disease Assessment ◽  
Measurement Information ◽  
Patient Reported ◽  
Disease Specific

Objective.The antineutrophil cytoplasmic antibody–associated vasculitides (AAV) are multiorgan diseases. Patients with AAV report impairment in their health-related quality of life (HRQOL) and have different priorities regarding disease assessment compared with physicians. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group previously received endorsement for a core set of domains in AAV. Two approaches to measure patient-reported outcomes (PRO) were presented at OMERACT 2016.Methods.A novel 5-step tool was used to facilitate assessment of the instruments by delegates: the OMERACT Filter 2.0 Instrument Selection Algorithm, with a red-amber-green checklist of questions, including (1) good match with domain (face and content validity), (2) feasibility, (3) do numeric scores make sense (construct validity)?, (4) overall ratings of discrimination, and (5) can individual thresholds of meaning be defined? Delegates gave an overall endorsement. Three generic Patient-Reported Outcomes Measurement Information System (PROMIS) instruments (fatigue, physical functioning, and pain interference) and a disease-specific PRO, the AAV-PRO (6 domains related to symptoms and HRQOL), were presented.Results.OMERACT delegates endorsed the use of the PROMIS instruments for fatigue, physical functioning, and pain interference (87.6% overall endorsement) and the disease-specific AAV-PRO instrument (89.4% overall endorsement).Conclusion.The OMERACT Vasculitis Working Group gained endorsement by OMERACT for use of the PROMIS and the AAV-PRO in clinical trials of vasculitis. These instruments are complementary to each other. The PROMIS and the AAV-PRO need further work to assess their utility in longitudinal settings, including their ability to discriminate between treatments of varying efficacy in the setting of a randomized controlled trial.

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