Abstract 106: Defining an International Standard Set of Patient-centered Outcome Measures After Stroke

2015 ◽  
Vol 8 (suppl_2) ◽  
Author(s):  
Joel Salinas ◽  
Keyword(s):  
Intracerebral Hemorrhage ◽  
Outcome Measures ◽  
Risk Adjustment ◽  
Short Form ◽  
Stroke Severity ◽  
Patient Centered ◽  
Duration Of Symptoms ◽  
International Standard ◽  
Patient Reported ◽  
Standard Set

Background: Value-based healthcare delivery is a strategy to align patients, providers, and payers toward improving outcomes while reducing costs. We sought to define an international standard set of patient-centered, stroke health outcomes. Methods: We assembled an international expert panel representing patients, advocates, and physician experts in stroke outcomes, stroke registries, global health, epidemiology, and rehabilitation. A modified Delphi process was used to reach consensus recommendations for a Standard Set of outcome measures, baseline risk adjustment variables, and included populations for use in both low and high income countries. Results: Patients presenting to a hospital with ischemic stroke or intracerebral hemorrhage evaluated with brain imaging were selected as the required included population, with optional inclusion of transient ischemic attacks. Because of differences in ascertainment and imaging modalities, duration of symptoms and type of imaging are collected to allow for comparisons of homogeneous groups across various countries and practice settings. Basic functional status is assessed at prestroke baseline, index admission, discharge, 90 days, and 1 year thereafter. Co-morbidities and stroke severity are collected for risk adjustment. Symptomatic intracerebral hemorrhage after thrombolysis is the only complication captured, and many measures reflect patient-reported quality of life outcomes and priorities captured in the Patient Reported Outcomes Measurement Information System 10-question short form (PROMIS-10) and elements from existing registries. Conclusions: The stroke measure Standard Set is proposed for implementation to permit meaningful comparisons and increase value of stroke care worldwide using a simple, pragmatic strategy.

Developing an International Standard Set of Patient-Reported Outcome Measures for Psychotic Disorders

2021 ◽  
pp. appi.ps.2020008
Author(s):  
Emily McKenzie ◽  
Lucy Matkin ◽  
Luz Sousa Fialho ◽  
Ifeoma Nneka Emelurumonye ◽  
Timea Gintner ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Psychotic Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
International Standard ◽  
Patient Reported ◽  
Standard Set

scholarly journals An International Standard Set of Patient-Centered Outcome Measures After Stroke

Stroke ◽  
2016 ◽  
Vol 47 (1) ◽  
pp. 180-186 ◽  
Author(s):  
Joel Salinas ◽  
Sara M. Sprinkhuizen ◽  
Teri Ackerson ◽  
Julie Bernhardt ◽  
Charlie Davie ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Patient Centered ◽  
International Standard ◽  
Standard Set

scholarly journals Defining an international standard set of patient-centered outcome measures after stroke

2015 ◽  
Vol 357 ◽  
pp. e394
Author(s):  
S. Martins ◽  
B. Norrving ◽  
J. Salinas ◽  
S. Sprinkhuizen ◽  
L. Schwamm
Keyword(s):  
Outcome Measures ◽  
Patient Centered ◽  
International Standard ◽  
Standard Set

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 Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process

2020 ◽  
pp. archdischild-2020-320345
Author(s):  
Beatrix Algurén ◽  
Jessily P Ramirez ◽  
Matthew Salt ◽  
Nick Sillett ◽  
Stacie N Myers ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Healthcare Delivery ◽  
Well Being ◽  
Delphi Process ◽  
Global Perspective ◽  
Modified Delphi ◽  
Starting Point ◽  
Patient Reported ◽  
Standard Set ◽  
Paediatric Health

ObjectiveTo develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition.DesignA modified Delphi process.SettingThe International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey.ResultsFrom a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0–5, 6–12, 13–17, 18–24 years) include either five or six measures with an average time for completion of 20 min.ConclusionsThe OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being.

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 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.

OP95 Are Patient-Reported Outcome Measures Meeting Today's Standards?

2018 ◽  
Vol 34 (S1) ◽  
pp. 34-35
Author(s):  
Elisabeth Oehrlein ◽  
Eleanor Perfetto ◽  
T. Rose Love ◽  
Yujin Chung ◽  
Parima Ghafoori
Keyword(s):  
Outcome Measures ◽  
Patient Engagement ◽  
Rating Scale ◽  
Psychometric Validation ◽  
Cognitive Interviewing ◽  
Patient Centered ◽  
Concept Elicitation ◽  
Patient Diary ◽  
Patient Reported ◽  
Disease Specific

Introduction:Over the past decade, health technology assessment (HTA) agencies have become interested in improving the patient-centeredness of their assessments. A common approach has been to prioritize patient-reported outcomes (PROs), often describing PROs as patient-relevant or patient-oriented. However, it is often unclear whether and to what degree PRO measures (PROMs) truly reflect what is important to patients. This review examined the pedigree of a sample of measures used as primary or secondary endpoints in trials and discussed in Food and Drug Administration (FDA) approved product labels between 2003 and 2014.Methods:We examined all 26 PROs included in chapters 1 (Office of Microbial Products) and 2 (Office of Drug Evaluation I) of the FDA's Pilot Clinical Outcome Assessment (COA) Compendium. Three reviewers independently searched PubMed and Google to identify publications or other relevant materials related to method and stage of measure development where patient engagement took place.Results:Among 26 evaluated PROMs, we were unable to locate any information on development or validation for 12 (patient diary=9; rating scale=3). Among the remaining 14 PROMs, 5 did not include any evidence of patient engagement (questionnaire=1; patient diary=2; rating scale=2); 3 engaged patients during concept elicitation or psychometric validation only (disease-specific questionnaires=3); and 6 engaged patients during both concept elicitation and cognitive interviewing (disease-specific questionnaires=6). PROMs either previously qualified or submitted for qualification by FDA were more likely to include patient engagement.Conclusions:PROs can provide patient-centered data useful for HTA; however, patient-reported information is not inherently patient-centered. This study found that only a minority of sampled PROMs engaged patients during both concept elicitation and cognitive interviewing. To facilitate patient-centered HTA, manufacturers should ensure that PROMs incorporated into clinical trials measure concepts important to patients. Similarly, HTAs should request data on development and validation of all outcome measures incorporated into trials.

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