Which outcomes are most important to measure in patients with COVID-19 and how and when should these be measured? Development of an international standard set of outcomes measures for clinical use in patients with COVID-19: a report of the International Consortium for Health Outcomes Measurement (ICHOM) COVID-19 Working Group

ObjectivesThe COVID-19 pandemic has resulted in widespread morbidity and mortality with the consequences expected to be felt for many years. Significant variation exists in the care even of similar patients with COVID-19, including treatment practices within and between institutions. Outcome measures vary among clinical trials on the same therapies. Understanding which therapies are of most value is not possible unless consensus can be reached on which outcomes are most important to measure. Furthermore, consensus on the most important outcomes may enable patients to monitor and track their care, and may help providers to improve the care they offer through quality improvement. To develop a standardised minimum set of outcomes for clinical care, the International Consortium for Health Outcomes Measurement (ICHOM) assembled a working group (WG) of 28 volunteers, including health professionals, patients and patient representatives.DesignA list of outcomes important to patients and professionals was generated from a systematic review of the published literature using the MEDLINE database, from review of outcomes being measured in ongoing clinical trials, from a survey distributed to patients and patient networks, and from previously published ICHOM standard sets in other disease areas. Using an online-modified Delphi process, the WG selected outcomes of greatest importance.ResultsThe outcomes considered by the WG to be most important were selected and categorised into five domains: (1) functional status and quality of life, (2) mental functioning, (3) social functioning, (4) clinical outcomes and (5) symptoms. The WG identified demographic and clinical variables for use as case-mix risk adjusters. These included baseline demographics, clinical factors and treatment-related factors.ConclusionImplementation of these consensus recommendations could help institutions to monitor, compare and improve the quality and delivery of care to patients with COVID-19. Their consistent definition and collection could also broaden the implementation of more patient-centric clinical outcomes research.

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Defining an International Standard Set of Outcome Measures for Patients With Hip or Knee Osteoarthritis: Consensus of the International Consortium for Health Outcomes Measurement Hip and Knee Osteoarthritis Working Group

Arthritis Care & Research ◽

10.1002/acr.22868 ◽

2016 ◽

Vol 68 (11) ◽

pp. 1631-1639 ◽

Cited By ~ 54

Author(s):

Ola Rolfson ◽

Stephanie Wissig ◽

Lisa van Maasakkers ◽

Caleb Stowell ◽

Ilana Ackerman ◽

...

Keyword(s):

Knee Osteoarthritis ◽

Health Outcomes ◽

Outcome Measures ◽

Working Group ◽

Outcomes Measurement ◽

International Consortium ◽

International Standard ◽

Standard Set

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Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group

European Heart Journal ◽

10.1093/eurheartj/ehz871 ◽

2020 ◽

Vol 41 (10) ◽

pp. 1132-1140 ◽

Cited By ~ 8

Author(s):

William H Seligman ◽

Zofia Das-Gupta ◽

Adedayo O Jobi-Odeneye ◽

Elena Arbelo ◽

Amitava Banerjee ◽

...

Keyword(s):

Atrial Fibrillation ◽

Health Outcomes ◽

Health Professionals ◽

Working Group ◽

Case Mix ◽

Outcomes Measurement ◽

International Consortium ◽

Patient Reported ◽

Icd Codes ◽

Standard Set

Abstract 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.

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A Standard Set for Outcome Measurement in Patients With Hand and Wrist Conditions: Consensus by the International Consortium for Health Outcomes Measurement Hand and Wrist Working Group

The Journal Of Hand Surgery ◽

10.1016/j.jhsa.2021.06.004 ◽

2021 ◽

Author(s):

Robbert M. Wouters ◽

Adedayo O. Jobi-Odeneye ◽

Alethse de la Torre ◽

Andria Joseph ◽

Steven E.R. Hovius ◽

...

Keyword(s):

Health Outcomes ◽

Working Group ◽

Outcome Measurement ◽

Outcomes Measurement ◽

International Consortium ◽

Standard Set

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Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group

American Journal of Kidney Diseases ◽

10.1053/j.ajkd.2018.10.007 ◽

2019 ◽

Vol 73 (3) ◽

pp. 372-384 ◽

Cited By ~ 27

Author(s):

Wouter R. Verberne ◽

Zofia Das-Gupta ◽

Andrew S. Allegretti ◽

Hans A.J. Bart ◽

Wim van Biesen ◽

...

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Health Outcomes ◽

Outcome Measures ◽

Working Group ◽

Outcomes Measurement ◽

International Consortium ◽

International Standard ◽

Standard Set

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Patient-Centered Measurement Set for Colorectal Cancer: Product of the International Consortium for Health Outcomes Measurement Working Group

American Journal of Clinical Pathology ◽

10.1093/ajcp/aqw158.004 ◽

2016 ◽

Vol 146 (suppl_1) ◽

Author(s):

Melissa Upton ◽

Jessica Zerillo ◽

Maartje Schouwenburg ◽

Annelotte van Bommel ◽

Caleb Stowell ◽

...

Keyword(s):

Colorectal Cancer ◽

Health Outcomes ◽

Working Group ◽

Patient Centered ◽

Outcomes Measurement ◽

International Consortium

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NCOG-18. RELATIONSHIP BETWEEN RANO-PRO WORKING GROUP STANDARDIZED PRIORITY CONSTRUCTS AND DISEASE PROGRESSION AMONG MALIGNANT GLIOMA PATIENTS AS MEASURED THROUGH CLINICAL OUTCOMES ASSESSMENTS

Neuro-Oncology ◽

10.1093/neuonc/noab196.609 ◽

2021 ◽

Vol 23 (Supplement_6) ◽

pp. vi155-vi156

Author(s):

Elizabeth Vera ◽

Tito Mendoza ◽

Alvina Acquaye ◽

Nicole Briceno ◽

Anna Choi ◽

...

Keyword(s):

Malignant Glioma ◽

Disease Progression ◽

Clinical Outcomes ◽

Stable Disease ◽

Working Group ◽

Karnofsky Performance Status ◽

Clinical Care ◽

Self Care ◽

Work Activity ◽

Core Symptoms

Abstract Recognizing the importance of clinical outcomes assessments (COA), the RANO-PRO Working Group recommends inclusion of core symptoms/functions in clinical care/research for malignant glioma patients. This study evaluated the association between the recommended symptoms (pain, perceived cognition, seizures, aphasia, treatment-specific symptoms) and functions (physical: weakness, walking; and role/social: work, usual activities) and disease progression in these patients. MDASI-Brain Tumor and EQ-5D-3L scores, Karnofsky Performance Status (KPS), and Neurologic Function Score (NFS) were evaluated in relation to disease progression by chi-square tests, independent- and paired-samples t-tests, adjusted for multiple comparisons. Our sample included 336 patients with malignant glioma; 82% white, 64% male, median age=52 (21-79). Imaging study revealed disease progression for 46% of patients. All symptoms except seizures and difficulty concentrating were worse in the group whose imaging showed disease progression versus stable disease, as well as the functions of walking, work, activity, and self-care (0.8 < difference < 1.8). Patients with disease progression were 4 times more likely to have a poor KPS (≤ 80) and worse NFS. Among patients with disease progression (n=112), all symptoms, except seizures, worsened from first assessment to time of progression. Up to 22% of patients reported worsening mobility, self-care, and usual activity; 46% and 35% had worsened KPS and NFS, respectively. Seven symptoms and functions were each individually reported by at least 10% of patients as having worsened the most. Worsening of symptoms and functions was not observed among patients with stable disease, except in difficulty understanding. Identified core symptoms/functions worsen at the time of progression demonstrating the relationship between priority constructs and a traditional tumor response measure while highlighting the importance of longitudinal collection of COA. The pattern of worsening was observed via both patient- and clinician-reported outcomes, emphasizing the utility of COA in clinical care and clinical trials.

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