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At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy, and their representatives to develop minimum sets of standardized outcomes and outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy. Consensus methods identified 20 core outcomes. In addition to the outcomes identified for the ICHOM Epilepsy adult standard set, behavioral, motor, and cognitive/language development outcomes were voted as essential for all infants and children with epilepsy. The proposed set of outcomes and measurement methods will facilitate the implementation of the use of patient-centered outcomes in daily practice., (© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross-cultural applicability. The essential outcomes included many non-seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient-centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts., (© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Background: Healthcare systems around the world experience increasing pressure to control future growth of healthcare expenditures. Among other initiatives, quality and value-based benchmarking has become an important field to inform clinical evaluation and reimbursement questions. The International Consortium for Health Outcomes Measurement (ICHOM) has become one of the driving forces to translate scientific evidence into standardized assessments that are routinely applicable in day-to-day care settings. These aim to provide a benchmarking tool that allows the comparison and competition of health care delivery on the basis of value-based health care principles., Methods: This work focuses on the consolidation of the ICHOM methodology and presents insights from 27 routinely implemented Standard Sets. The analysis is based on a literature review of the ICHOM literature repository, a process document review and key informant interviews with ICHOM's outcomes research and development team., Results: Key findings are that the scope of ICHOM Standard Sets shifted from a more static focus on burden of disease and poorly standardized care pathways to a more dynamic approach that also takes into account questions about the setting of care, feasibility of implementing a benchmarking tool and compatibility of different Standard Sets. Although certain overlaps exist with other initiatives in the field of patient reported outcomes (PRO), their scopes differ significantly and they hence rather complement each other. ICHOM pursues a pragmatic approach to enable the benchmarking and the analysis of healthcare delivery following the principles of value-based healthcare., Conclusion: The ICHOM Standard Sets complement other initiatives in the field of patient-reported outcomes (PRO) and functional reporting by placing a particular focus on healthcare delivery, while other initiatives primarily focus on evaluation of academic endpoints. Although ICHOM promotes a pragmatic approach towards developing and devising its Standard Sets, the definition of standardized decision making processes emerged as one of the key challenges. Furthermore, the consolidation of core metrics across number of disease areas to enable the parallel implementation of different Standard Sets in the same care setting is an important goal that will enable the widespread implementation of patient-reported outcome measures (PROM)., (© 2022. The Author(s).)

Aims: As health systems around the world increasingly look to measure and improve the value of care that they provide to patients, being able to measure the outcomes that matter most to patients is vital. To support the shift towards value-based health care in atrial fibrillation (AF), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international Working Group (WG) of 30 volunteers, including health professionals and patient representatives to develop a standardized minimum set of outcomes for benchmarking care delivery in clinical settings., Methods and Results: Using an online-modified Delphi process, outcomes important to patients and health professionals were selected and categorized into (i) long-term consequences of disease outcomes, (ii) complications of treatment outcomes, and (iii) patient-reported outcomes. The WG identified demographic and clinical variables for use as case-mix risk adjusters. These included baseline demographics, comorbidities, cognitive function, date of diagnosis, disease duration, medications prescribed and AF procedures, as well as smoking, body mass index (BMI), alcohol intake, and physical activity. Where appropriate, and for ease of implementation, standardization of outcomes and case-mix variables was achieved using ICD codes. The standard set underwent an open review process in which over 80% of patients surveyed agreed with the outcomes captured by the standard set., Conclusion: Implementation of these consensus recommendations could help institutions to monitor, compare and improve the quality and delivery of chronic AF care. Their consistent definition and collection, using ICD codes where applicable, could also broaden the implementation of more patient-centric clinical outcomes research in AF., (© The Author(s) 2020. Published by Oxford University Press on behalf of the European Society of Cardiology.)

Objective: The implementation of value-based health care in inflammatory arthritis requires a standardized set of modifiable outcomes and risk-adjustment variables that is feasible to implement worldwide., Methods: The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary working group that consisted of 24 experts from 6 continents, including 6 patient representatives, to develop a standard set of outcomes for inflammatory arthritis. The process followed a structured approach, using a modified Delphi process to reach consensus on the following decision areas: conditions covered by the set, outcome domains, outcome measures, and risk-adjustment variables. Consensus in areas 2 to 4 were supported by systematic literature reviews and consultation of experts., Results: The ICHOM Inflammatory Arthritis Standard Set covers patients with rheumatoid arthritis (RA), axial spondyloarthritis, psoriatic arthritis, and juvenile idiopathic arthritis (JIA). We recommend that outcomes regarding pain, fatigue, activity limitations, overall physical and mental health impact, work/school/housework ability and productivity, disease activity, and serious adverse events be collected at least annually. Validated measures for patient-reported outcomes were endorsed and linked to common reporting metrics. Age, sex at birth, education level, smoking status, comorbidities, time since diagnosis, and rheumatoid factor and anti-citrullinated protein antibody lab testing for RA and JIA should be collected as risk-adjustment variables., Conclusion: We present the ICHOM inflammatory arthritis Standard Set of outcomes, which enables health care providers to implement the value-based health care framework and compare outcomes that are important to patients with inflammatory arthritis., (© 2018, The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology.)

As health systems around the world increasingly look to record and improve the value of care that they provide to patients, being able to measure the outcomes that matter most to patients is vital. Clinicians today gather more data than ever before, but what is measured often has little relationship to the results of care that matter most to patients. Through its working groups of global experts in particular diseases, the International Consortium for Health Outcomes Measurement aims to define minimum Standard Sets of outcomes, along with case-mix factors to support risk adjustment and meaningful comparison. These Standard Sets may then be implemented globally empowering patients to select providers with the best outcomes at the lowest cost, empowering providers that deliver superior outcomes at competitive costs to excel, and empowering payers to negotiate contracts based on results. The International Consortium for Health Outcomes Measurement has published 24 Standard Sets including coronary artery disease, heart failure, hypertension, and stroke and is nearing the completion of its work in atrial fibrillation., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2018. For permissions, please email: journals.permissions@oup.com.)

Value-based health care is increasingly promoted as a strategy for improving care quality by benchmarking outcomes that matter to patients relative to the cost of obtaining those outcomes. To support the shift toward value-based health care in chronic kidney disease (CKD), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international working group of health professionals and patient representatives to develop a standardized minimum set of patient-centered outcomes targeted for clinical use. The considered outcomes and patient-reported outcome measures were generated from systematic literature reviews. Feedback was sought from patients and health professionals. Patients with very high-risk CKD (stages G3a/A3 and G3b/A2-G5, including dialysis, kidney transplantation, and conservative care) were selected as the target population. Using an online modified Delphi process, outcomes important to all patients were selected, such as survival and hospitalization, and to treatment-specific subgroups, such as vascular access survival and kidney allograft survival. Patient-reported outcome measures were included to capture domains of health-related quality of life, which were rated as the most important outcomes by patients. Demographic and clinical variables were identified to be used as case-mix adjusters. Use of these consensus recommendations could enable institutions to monitor, compare, and improve the quality of their CKD care., (Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.)