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

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

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 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.

A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care

2017 ◽  
Vol 54 (5) ◽  
pp. 540-554 ◽  
Author(s):  
Alexander C. Allori ◽  
Thomas Kelley ◽  
John G. Meara ◽  
Asteria Albert ◽  
Krishnamurthy Bonanthaya ◽  
...  
Keyword(s):  
Health Care ◽  
Outcome Measures ◽  
Comparative Effectiveness ◽  
Cleft Lip ◽  
Effectiveness Research ◽  
Data Standards ◽  
Prospective Data ◽  
Treatment Protocols ◽  
Multidisciplinary Working ◽  
Standard Set

Care of the patient with cleft lip and/or palate remains complex. Prior attempts at aggregating data to study the effectiveness of specific interventions or overall treatment protocols have been hindered by a lack of data standards. There exists a critical need to better define the outcomes- particularly those that matter most to patients and their families-and to standardize the methods by which these outcomes will be measured. This report summarizes the recommendations of an international, multidisciplinary working group with regard to which outcomes a typical cleft team could track, how those outcomes could be measured and recorded, and what strategies may be employed to sustainably implement a system for prospective data collection. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of cleft care that intercenter comparisons can become possible. This is important for quality-improvement endeavors, comparative effectiveness research, and value-based health-care reform.

International Dermatology Outcome Measures Initiative as Applied to Psoriatic Disease Outcomes: An Update

2016 ◽  
Vol 43 (5) ◽  
pp. 959-960 ◽  
Author(s):  
Joseph F. Merola ◽  
April W. Armstrong ◽  
Ami Saraiya ◽  
John Latella ◽  
Amit Garg ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Treatment Efficacy ◽  
Regulatory Agencies ◽  
Washington Dc ◽  
Patient Centered ◽  
Psoriatic Disease ◽  
Disease Outcomes ◽  
Dermatologic Disease

Previous publications have described the International Dermatology Outcome Measures (IDEOM) group, comprising patients, physicians, health economists, participating pharmaceutical industry partners, payers, and regulatory agencies. The goal of IDEOM is to create patient-centered, validated measures of dermatologic disease progression and treatment efficacy for use in both clinical trials and clinical practice. We provide an update of IDEOM activities as of our 2015 IDEOM meeting in Washington, DC, USA.

scholarly journals Results of the standard set for pulmonary sarcoidosis: feasibility and multicentre outcomes

2019 ◽  
Vol 5 (4) ◽  
pp. 00094-2019 ◽  
Author(s):  
Nynke A. Kampstra ◽  
Paul B. van der Nat ◽  
Lea M. Dijksman ◽  
Frouke T. van Beek ◽  
Daniel A. Culver ◽  
...  
Keyword(s):  
Data Collection ◽  
Clinical Outcome ◽  
Pulmonary Function ◽  
Outcome Measures ◽  
Interleukin 2 ◽  
Pulmonary Sarcoidosis ◽  
Forced Expiratory Volume ◽  
Baseline Body Mass Index ◽  
Weight Changes ◽  
Standard Set

Our study presents findings on a previously developed standard set of clinical outcome data for pulmonary sarcoidosis patients. We aimed to assess whether changes in outcome varied between the different centres and to evaluate the feasibility of collecting the standard set retrospectively.This retrospective observational comparative benchmark study included six interstitial lung disease expert centres based in the Netherlands, Belgium, the UK and the USA. The standard set of outcome measures included 1) mortality, 2) changes in pulmonary function (forced vital capacity (FVC), forced expiratory volume in 1 s, diffusing capacity of the lung for carbon monoxide), 3) soluble interleukin-2 receptor (sIL-2R) change, 4) weight changes, 5) quality-of-life (QoL) measures, 6) osteoporosis and 7) clinical outcome status (COS). Data collection was considered feasible if the data were collected in ≥80% of all patients.509 patients were included in the retrospective cohort. In total six patients died, with a mean survival of 38±23.4 months after the diagnosis. Centres varied in mean baseline FVC, ranging from 110 (95% CI 92–124)% predicted to 99 (95% CI 97–123)% pred. Mean baseline body mass index (BMI) of patients in the different centres varied between 27 (95% CI 23.6–29.4) kg·m−2 and 31.8 (95% CI 28.1–35.6) kg·m−2. 310 (60.9%) patients were still on systemic therapy 2 years after the diagnosis. It was feasible to measure mortality, changes in pulmonary function, weight changes and COS. It is not (yet) feasible to retrospectively collect sIL-2R, osteoporosis and QoL data internationally.This study shows that data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. Trends in pulmonary function and BMI were similar for different hospitals when comparing different practices.

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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