International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients

Burns, Daniel J.P.; Arora, Jason; Okunade, Oluwakemi; Beltrame, John F.; Bernardez‐Pereira, Sabrina; Crespo-Leiro, María G.; Filippatos, Gerasimos; Hardman, S. M. C.; Hoes, Arno W.; Hutchison, Stephen; Jessup, Mariell; Kinsella, Tina; Knapton, Mike; Lam, Carolyn S.P.; Masoudi, Frederick A.; McIntyre, Hugh; Mindham, Richard; Morgan, Louise; Otterspoor, Luuk C.; Parker, Victoria; Persson, Hans; Pinnock, Claude; Reid, Christopher M.; Riley, Jillian; Stevenson, Lynne Warner; McDonagh, Theresa A.

doi:10.1016/j.jchf.2019.09.007

Cited by 85 publications

(80 citation statements)

References 18 publications

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“…The KCCQ is a valid, reliable and responsive health status measure for patients with HF and was demonstrated by many studies to be a clinically meaningful outcome in cardiovascular research, patient management and quality assessment [ 10 ]. Moreover, the International Consortium for Health Outcomes Measurement recently published a statement [ 11 ] including KCCQ as one of the most commonly used PROM in heart failure, well validated and widely studied.…”

Section: Discussionmentioning

confidence: 99%

Quality of life status determinants in hypertrophic cardiomyopathy as evaluated by the Kansas City Cardiomyopathy Questionnaire

Capota

Militaru

Ionescu

et al. 2020

Health Qual Life Outcomes

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Purpose The present study evaluated how heart failure (HF) negatively impacts health-related quality of life (HRQoL) in hypertrophic cardiomyopathy (HCM) patients and explored the major clinical determinants associated with HRQoL impairment in this population. Methods This was a cross-sectional single-center study of health-related HRQoL that included 91 consecutive patients with HCM. Evaluation was performed based on a comprehensive protocol that included the recommended diagnostic studies, as well as administration of the translated validated version of the Kansas City Cardiomyopathy Questionnaire (KCCQ) (CV Outcomes Inc) as a health status measure. Results The cohort included 52 (57%) males, median age 58 (20–85) years. The median global KCCQ score was 67 (12.5–100) corresponding to a moderate impairment in HRQoL. There was an inverse correlation between the median global KCCQ score and NYHA class (Kendall’s tau b coefficient r − 0.33, p = 0.001). Patients with pulmonary hypertension (PHT), defined as resting pulmonary artery systolic pressure of ≥ 45 mmHg, presented a significantly worse HRQoL as compared to those without PHT (median KCCQ score 56.2 vs 77.5, p = 0.013). The KCCQ score mildly correlated with age (r − 0.18, p = 0.014), history of syncope (r − 0.18, p = 0.045), estimated glomerular filtration rate (eGFR) (r 0.31, p < 0.001), plasmatic creatinine (r − 0.18, p = 0.017) and urea levels (r − 0.27, p < 0.001), left ventricular (LV) end-systolic dimensions (r − 0.18, p = 0.014), maximal provoked intraventricular gradient (r 0.20, p = 0.039), LV ejection fraction (r 0.15, p = 0.04), average E/e′ (r − 0.16, p = 0.039), pulmonary acceleration time (r 0.21, p = 0.007), pulmonary artery systolic pressure (r − 0.20, p = 0.016). In ordinal regression, the independent predictors of HRQoL were NYHA class and eGFR. Conclusions Patients with HCM and HF present a moderate degree of alteration in HRQoL. This is especially true for patients with PHT and more severe functional impairment. Renal failure and NYHA class are potential markers of HRQoL in clinical practice.

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Section: Discussionmentioning

confidence: 99%

Quality of life status determinants in hypertrophic cardiomyopathy as evaluated by the Kansas City Cardiomyopathy Questionnaire

Capota

Militaru

Ionescu

et al. 2020

Health Qual Life Outcomes

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“…The ICHOM heart failure outcomes standard set 39 was chosen as the most appropriate source of outcome indicators to target. Out of the total of 72 ICHOM data items, a subset of 21 variables was selected as being most likely to be routinely collected within the hospital in patients suffering from CHF, and to be indicative of the overall quality of data collected on this type of patients.…”

Section: Methodsmentioning

confidence: 99%

Is the quality of hospital EHR data sufficient to evidence its ICHOM outcomes performance in heart failure? A pilot evaluation

Aerts

Kalra²,

Sáez

et al. 2021

Preprint

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There is increasing recognition that healthcare providers need to focus attention, and be judged against, the impact they have on the health outcomes experienced by patients. The measurement of health outcomes as a routine part of clinical documentation is probably the only scalable way of collecting outcomes evidence, since secondary data collection is expensive and error prone. However, there is uncertainty about whether routinely collected clinical data within EHR systems includes the data most relevant to measuring and comparing outcomes, and if those items are collected to a good enough data quality to be relied upon for outcomes assessment, since several studies have pointed out significant issues regarding EHR data availability and quality. In this paper, we first describe a practical approach to data quality assessment of health outcomes, based on a literature review of existing frameworks for quality assessment of health data and multi-stakeholder consultation. Adopting this approach, we perform a pilot study on a subset of 21 International Consortium for Health Outcomes Measurement (ICHOM) outcomes data items from patients with congestive heart failure. To this end, all available registries compatible with the diagnosis of heart failure within the IMASIS-2 data repository connected to the Hospital del Mar network (142,345 visits of 12,503 patients) were extracted and mapped to the ICHOM format. We focus our pilot assessment on five commonly used data quality dimensions: completeness, correctness, consistency, uniqueness and temporal stability. Overall, this pilot study reveals high scores on the consistency, completeness and uniqueness dimensions. Temporal stability analyses show some changes over time in the reported use of medication to treat heart failure, as well as in the recording of past medical conditions. Finally, investigation of data correctness suggests several issues concerning the proper characterization of missing data values. Many of these issues appear to be introduced while mapping the IMASIS-2 relational database contents to the ICHOM format, as the latter requires a level of detail which is not explicitly available in the coded data of an EHR. To truly examine to what extent hospitals today are able to routinely collect the evidence of their success in achieving good health outcomes, future research would benefit from performing more extensive data quality assessments, including all data items from the ICHOM heart failure standard set, across multiple hospitals.

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“…All of these related COS include stakeholders from Europe and America. Two studies include stakeholders from Asia (Singapore) and Oceania (Australia) (13,14). The results missed the views of stakeholders from middle-and low-income areas and stakeholders that provide and accept herbs or complementary and alternative medicine.…”

Section: Introductionmentioning

confidence: 97%

“…Another study represents the perspectives of a workshop held in 2014, which recommended endpoints selection that should be considered for future clinical trials of HF with preserved ejection fraction (HFpEF) in targeted therapies (COS for HFpEF) (13). To our knowledge, thus far, only one international consortium has developed a standardized outcome measurement set for patients with HF, dedicated to increase quality and value in HF care (COS for HF practice) (14).…”

Section: Introductionmentioning

confidence: 99%

Development of a Core Outcome Set for the Benefits and Adverse Events of Acute Heart Failure in Clinical Trials of Traditional Chinese Medicine and Western Medicine: A Study Protocol

et al. 2021

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Aims: To identify a minimum set of efficacy and adverse events for patients with acute heart failure (AHF) among different stakeholders in clinical trials of traditional Chinese medicine and Western medicine.Methods and Analysis: First, we will develop a preliminary long list of outcomes that includes efficacy and adverse events/reactions via three steps: (i) systematic reviews of efficacy and safety outcomes for clinical trials of AHF; (ii) drugs included in the National Medical Insurance Catalog, the National Essential Medicines Catalog, and the WHO Essential Medicines List will be collected and safety outcomes extracted from the package inserts; and (iii) patients' or caregivers' semi-structured interviews will be carried out to add new viewpoints to the list. Second, after merging outcomes and grouping them under different outcome domains, questionnaires for health professionals and patients will be separately developed. Further, two rounds of Delphi survey for health professionals and a survey for patients and the public will be carried out. Third, different stakeholders will discuss and determine the final core outcome set (COS) for AHF in a consensus meeting.Ethics and Dissemination: The entire project has been approved by the Ethics Committee of the main institution. After the final COS is developed, it will be published and discussed widely in conferences.Clinical Trial Registration: This study is registered with the Core Outcome Measures in Effectiveness Trials database as study 1566 (available at: https://www.cometinitiative.org/Studies/Details/1566).

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International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients

Cited by 85 publications

References 18 publications

Quality of life status determinants in hypertrophic cardiomyopathy as evaluated by the Kansas City Cardiomyopathy Questionnaire

Quality of life status determinants in hypertrophic cardiomyopathy as evaluated by the Kansas City Cardiomyopathy Questionnaire

Is the quality of hospital EHR data sufficient to evidence its ICHOM outcomes performance in heart failure? A pilot evaluation

Development of a Core Outcome Set for the Benefits and Adverse Events of Acute Heart Failure in Clinical Trials of Traditional Chinese Medicine and Western Medicine: A Study Protocol

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