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

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.

2020 ESC Guidelines for the diagnosis and management of atrial fibrillation developed in collaboration with the European Association for Cardio-Thoracic Surgery (EACTS)

“…), a specific international standard set of outcome measures should be collected (Supplementary Figure 4). 299 This would also highlight areas requiring further development.…”

“…An international consortium of AF patients and healthcare professionals has identified the following PROs as important to measure for AF: health-related QoL, physical and emotional functioning, cognitive function, symptom severity, exercise tolerance, and ability to work (Supplementary Figure 4) 299 ; PRO measures can be used to assess these factors and the international standard set of AF outcome measures proposes some tools for assessing PROs. 299 Health informatics systems could help capture PRO data. Despite increasing support for the role of PRO measures in healthcare management, few studies and registries report collecting PRO data using validated tools.…”

The 4S-AF Scheme (Stroke Risk; Symptoms; Severity of Burden; Substrate): A Novel Approach to In-Depth Characterization (Rather than Classification) of Atrial Fibrillation

“…These systems provide an opportunity for the rapid creation of large data sets that can be used for research purposes. 25 The use of a uniformly structured characterization of AF patients across various data sets would further improve the compatibility of data from various sources.…”

World Heart Federation Roadmap on Atrial Fibrillation – A 2020 Update

“…Identification of deficiencies of patients’ knowledge plays a substantial role in designing and conducting evaluation of effective patient education platforms [ 195 196 ]. The following items have been identified as the most common knowledge gaps: recognizing AF presentations, AF risk factors, awareness about their diagnosis, drug and food interactions of OACs, dietary vitamin K food content and intake, meaning of INR and its interpretation, how to handle missed OAC doses, and OAC side effects [ 197 ].…”