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

doi:10.1093/eurheartj/ehz871

. 2020 Mar 7;41(10):1132-1140.

doi: 10.1093/eurheartj/ehz871.

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

William H Seligman¹, Zofia Das-Gupta¹, Adedayo O Jobi-Odeneye¹, Elena Arbelo^{2

3

4}, Amitava Banerjee⁵, Andreas Bollmann^{6

7

8}, Bridget Caffrey-Armstrong⁹, Daniel A Cehic¹⁰, Ramon Corbalan¹¹, Michael Collins¹², Gopi Dandamudi¹³, Prabhakaran Dorairaj¹⁴, Matthew Fay^{15

16}, Isabelle C Van Gelder¹⁷, Shinya Goto¹⁸, Christopher B Granger¹⁹, Bathory Gyorgy²⁰, Jeff S Healey²¹, Jeroen M Hendriks²², Mellanie True Hills²³, F D Richard Hobbs²⁴, Menno V Huisman²⁵, Kate E Koplan²⁶, Deirdre A Lane²⁷, William R Lewis²⁸, Trudie Lobban²⁹, Benjamin A Steinberg³⁰, Christopher J McLeod³¹, Spencer Moseley³², Adam Timmis^{33

34}, Guo Yutao³⁵, A John Camm³⁶

Affiliations

¹ International Consortium for Health Outcomes Measurement, Hamilton House, London WC1H 9BB, UK.
² Hospital Clínic, Universitat de Barcelona, Carrer de Villarroel, 170, 08036 Barcelona, Spain.
³ IDIBAPS, Institut d'Investigacio, August Pi I Sunyer, Rossello, 149-153, 08036 Barcelona, Spain.
⁴ Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV), Av. Monforte de Lemos, 3-5. Pabellon 11. Planta 0 28029 Madrid, Spain.
⁵ Institute of Health Informatics, University College London, 222 Euston Road, London NW1 2DA, UK.
⁶ Department of Electrophysiology, Heart Center Leipzig, University of Leipzig, Strumpellstrabe 39, 04289 Leipzig, Germany.
⁷ Leipzig Heart Institute, Russenstrabe 69A, 04289 Leipzig, Germany.
⁸ Leipzig Heart Digital, Russenstrabe 69A, 04289 Leipzig, Germany.
⁹ Health Service Executive, Dr. Steevens' Hospital, Steeven's Lane, Dublin 8, D08 W2A8, Ireland.
¹⁰ GenesisCare, Buildings 1&11, The Mill, 41-43 Bourke Road, Alexandria, NSW 2015, Australia.
¹¹ Cardiovascular Division, Pontificia Universidad Catolica de Chile, Av Libertador Bernardo O'Higgins 340, Santiago, Region Metropolitana, Chile.
¹² Overland Park, KS 66207, USA.
¹³ CHI Franciscan, 2709 Hemlock Street, Bremerton, WA 98310, USA.
¹⁴ Public Health Foundation of India, Unit No 316, 3rd Floor, Rectangle -1 Building, Plot No D-4, District Centre Saket, New Delhi-110017, India.
¹⁵ University of Warwick Medical School, The University of Warwick, Coventry CV4 7AL, UK.
¹⁶ Affinity Care, Westcliffe Road, Shipley, BD18 3EE, UK.
¹⁷ University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9713 GZ, Groningen, Netherlands.
¹⁸ Tokai University, 143 Shimokasuya, Isehara, Kanagawa 259-1193, Japan.
¹⁹ Department of Medicine, Duke University School of Medicine, Durham, NC 27710, USA.
²⁰ AIM Alliance Kft, Budapest, Hungary.
²¹ Population Health Research Institute, McMaster University, 237 Barton Street East, Hamilton, Ontario, ON L8L 2X2, Canada.
²² Centre for Heart Rhythm Disorders, South Australian Health and Medical Research Institute, University of Adelaide and Royal Adelaide Hospital, North Terrace, Adelaide SA 5000, Australia.
²³ StopAfib.org, American Foundation for Women's Health, PO Box 541, Greenwood, TX 76246, USA.
²⁴ Nuffield Department of Primary Care Health Sciences, University of Oxford, Radcliffe Primary Care Building, Radcliffe Observatory Quarter, Oxford OX2 6GG, UK.
²⁵ Department of Thrombosis and Hemostasis, Leiden University Medical Center, Akbinusdreef 2, 2333 ZA Leiden, Netherlands.
²⁶ The Southeast Permanente Medical Group, Kaiser Permanente Georgia, 9, 3495 Piedmont Rd NE, Atlanta, GA 30305, USA.
²⁷ Liverpool Centre for Cardiovascular Science, University of Liverpool and Liverpool Heart & Chest Hospital, Faculty of Health and Life Sciences, University of Liverpool, Brownlow Hill, Liverpool L69 3BX, UK.
²⁸ MetroHealth System, Case Western Reserve University, 2500 MetroHealth Drive, Cleveland, OH 44109, USA.
²⁹ Arrhythmia Alliance & AF Association, Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR, UK.
³⁰ Division of Cardiovascular Medicine, University of Utah Health Sciences Center, 50 N Medical Dr, Salt Lake City, UT 84132, USA.
³¹ Department of Cardiovascular Medicine, Mayo Clinic, 4500 San Pablo Rd S, Jacksonville, FL 32224, USA.
³² Tampa, FL, USA.
³³ Barts and The London School of Medicine and Dentistry, Garrod Building, Turner Street, Whitechapel, London E1 2AD, UK.
³⁴ Department of Interventional Cardiology, Barts Heart Centre, W Smithfield, London EC1A 7BE, UK.
³⁵ Chinese PLA General Hospital, 28 Fuxing Road, Haidian District, Beijing, China.
³⁶ Department of Clinical Cardiology, St George's University of London, Blackshaw Road, Tooting, London SW17 0QT, UK.

PMID: 31995195
PMCID: PMC7060456
DOI: 10.1093/eurheartj/ehz871

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

William H Seligman et al. Eur Heart J. 2020.

. 2020 Mar 7;41(10):1132-1140.

doi: 10.1093/eurheartj/ehz871.

Authors

Affiliations

¹ International Consortium for Health Outcomes Measurement, Hamilton House, London WC1H 9BB, UK.
² Hospital Clínic, Universitat de Barcelona, Carrer de Villarroel, 170, 08036 Barcelona, Spain.
³ IDIBAPS, Institut d'Investigacio, August Pi I Sunyer, Rossello, 149-153, 08036 Barcelona, Spain.
⁴ Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV), Av. Monforte de Lemos, 3-5. Pabellon 11. Planta 0 28029 Madrid, Spain.
⁵ Institute of Health Informatics, University College London, 222 Euston Road, London NW1 2DA, UK.
⁶ Department of Electrophysiology, Heart Center Leipzig, University of Leipzig, Strumpellstrabe 39, 04289 Leipzig, Germany.
⁷ Leipzig Heart Institute, Russenstrabe 69A, 04289 Leipzig, Germany.
⁸ Leipzig Heart Digital, Russenstrabe 69A, 04289 Leipzig, Germany.
⁹ Health Service Executive, Dr. Steevens' Hospital, Steeven's Lane, Dublin 8, D08 W2A8, Ireland.
¹⁰ GenesisCare, Buildings 1&11, The Mill, 41-43 Bourke Road, Alexandria, NSW 2015, Australia.
¹¹ Cardiovascular Division, Pontificia Universidad Catolica de Chile, Av Libertador Bernardo O'Higgins 340, Santiago, Region Metropolitana, Chile.
¹² Overland Park, KS 66207, USA.
¹³ CHI Franciscan, 2709 Hemlock Street, Bremerton, WA 98310, USA.
¹⁴ Public Health Foundation of India, Unit No 316, 3rd Floor, Rectangle -1 Building, Plot No D-4, District Centre Saket, New Delhi-110017, India.
¹⁵ University of Warwick Medical School, The University of Warwick, Coventry CV4 7AL, UK.
¹⁶ Affinity Care, Westcliffe Road, Shipley, BD18 3EE, UK.
¹⁷ University of Groningen, University Medical Center Groningen, Hanzeplein 1, 9713 GZ, Groningen, Netherlands.
¹⁸ Tokai University, 143 Shimokasuya, Isehara, Kanagawa 259-1193, Japan.
¹⁹ Department of Medicine, Duke University School of Medicine, Durham, NC 27710, USA.
²⁰ AIM Alliance Kft, Budapest, Hungary.
²¹ Population Health Research Institute, McMaster University, 237 Barton Street East, Hamilton, Ontario, ON L8L 2X2, Canada.
²² Centre for Heart Rhythm Disorders, South Australian Health and Medical Research Institute, University of Adelaide and Royal Adelaide Hospital, North Terrace, Adelaide SA 5000, Australia.
²³ StopAfib.org, American Foundation for Women's Health, PO Box 541, Greenwood, TX 76246, USA.
²⁴ Nuffield Department of Primary Care Health Sciences, University of Oxford, Radcliffe Primary Care Building, Radcliffe Observatory Quarter, Oxford OX2 6GG, UK.
²⁵ Department of Thrombosis and Hemostasis, Leiden University Medical Center, Akbinusdreef 2, 2333 ZA Leiden, Netherlands.
²⁶ The Southeast Permanente Medical Group, Kaiser Permanente Georgia, 9, 3495 Piedmont Rd NE, Atlanta, GA 30305, USA.
²⁷ Liverpool Centre for Cardiovascular Science, University of Liverpool and Liverpool Heart & Chest Hospital, Faculty of Health and Life Sciences, University of Liverpool, Brownlow Hill, Liverpool L69 3BX, UK.
²⁸ MetroHealth System, Case Western Reserve University, 2500 MetroHealth Drive, Cleveland, OH 44109, USA.
²⁹ Arrhythmia Alliance & AF Association, Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR, UK.
³⁰ Division of Cardiovascular Medicine, University of Utah Health Sciences Center, 50 N Medical Dr, Salt Lake City, UT 84132, USA.
³¹ Department of Cardiovascular Medicine, Mayo Clinic, 4500 San Pablo Rd S, Jacksonville, FL 32224, USA.
³² Tampa, FL, USA.
³³ Barts and The London School of Medicine and Dentistry, Garrod Building, Turner Street, Whitechapel, London E1 2AD, UK.
³⁴ Department of Interventional Cardiology, Barts Heart Centre, W Smithfield, London EC1A 7BE, UK.
³⁵ Chinese PLA General Hospital, 28 Fuxing Road, Haidian District, Beijing, China.
³⁶ Department of Clinical Cardiology, St George's University of London, Blackshaw Road, Tooting, London SW17 0QT, UK.

PMID: 31995195
PMCID: PMC7060456
DOI: 10.1093/eurheartj/ehz871

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.

Keywords: Atrial fibrillation; Outcomes; Patient-reported; Value-based health care.

PubMed Disclaimer

Figures

**Figure 1**
Relevance of outcomes included in ICHOM AF set according to patient open review.

See this image and copyright information in PMC

Cited by

Balancing adaptability and standardisation: insights from 27 routinely implemented ICHOM standard sets.
Benning L, Das-Gupta Z, Sousa Fialho L, Wissig S, Tapela N, Gaunt S. Benning L, et al. BMC Health Serv Res. 2022 Nov 28;22(1):1424. doi: 10.1186/s12913-022-08694-9. BMC Health Serv Res. 2022. PMID: 36443786 Free PMC article.
Clinical decision support to Optimize Care of patients with Atrial Fibrillation or flutter in the Emergency department: protocol of a stepped-wedge cluster randomized pragmatic trial (O'CAFÉ trial).
Vinson DR, Rauchwerger AS, Karadi CA, Shan J, Warton EM, Zhang JY, Ballard DW, Mark DG, Hofmann ER, Cotton DM, Durant EJ, Lin JS, Sax DR, Poth LS, Gamboa SH, Ghiya MS, Kene MV, Ganapathy A, Whiteley PM, Bouvet SC, Babakhanian L, Kwok EW, Solomon MD, Go AS, Reed ME; Kaiser Permanente CREST Network. Vinson DR, et al. Trials. 2023 Mar 31;24(1):246. doi: 10.1186/s13063-023-07230-2. Trials. 2023. PMID: 37004068 Free PMC article.
Advancing Research on the Complex Interrelations Between Atrial Fibrillation and Heart Failure: A Report From a US National Heart, Lung, and Blood Institute Virtual Workshop.
Al-Khatib SM, Benjamin EJ, Albert CM, Alonso A, Chauhan C, Chen PS, Curtis AB, Desvigne-Nickens P, Ho JE, Lam CSP, Link MS, Patton KK, Redfield MM, Rienstra M, Rosenberg Y, Schnabel R, Spertus JA, Stevenson LW, Hills MT, Voors AA, Cooper LS, Go AS. Al-Khatib SM, et al. Circulation. 2020 Jun 9;141(23):1915-1926. doi: 10.1161/CIRCULATIONAHA.119.045204. Epub 2020 Jun 8. Circulation. 2020. PMID: 32511001 Free PMC article. Review.
Mortality in atrial fibrillation. Is it changing?
Alonso A, Almuwaqqat Z, Chamberlain A. Alonso A, et al. Trends Cardiovasc Med. 2021 Nov;31(8):469-473. doi: 10.1016/j.tcm.2020.10.010. Epub 2020 Oct 27. Trends Cardiovasc Med. 2021. PMID: 33127438 Free PMC article. Review.
Comparing pulsed field electroporation and radiofrequency ablation for the treatment of paroxysmal atrial fibrillation: design and rationale of the BEAT PAROX-AF randomized clinical trial.
Erhard N, Frison E, Asselineau J, Aouar B, Boveda S, Cochet H, Deisenhofer I, Deneke T, Gimbert A, Kautzner J, Knecht S, Maury P, Neuzil P, Rousset M, Scherr D, Schneider CW, Sermesant M, Wichterle D, Jaïs P; BEAT-AF Study group. Erhard N, et al. Europace. 2024 May 2;26(5):euae103. doi: 10.1093/europace/euae103. Europace. 2024. PMID: 38646926 Free PMC article.

See all "Cited by" articles

References

1. Chugh SS, Havmoeller R, Narayanan K, Singh D, Rienstra M, Benjamin EJ, Gillum RF, Kim YH, McAnulty JH Jr, Zheng ZJ, Forouzanfar MH, Naghavi M, Mensah GA, Ezzati M, Murray CJ.. Worldwide epidemiology of atrial fibrillation: a Global Burden of Disease 201 Study. Circulation 2014;129:837–847. - PMC - PubMed
1. Krijthe BP, Kunst A, Benjamin EJ, Lip GY, Franco OH, Hofman A, Witteman JC, Stricker BH, Heeringa J.. Projections on the number of individuals with atrial fibrillation in the European Union, from 2000 to 2060. Eur Heart J 2013;34:2746–2751. - PMC - PubMed
1. Wolowacz SE, Samuel M, Brennan VK, Jasso-Mosqueda JG, Van Gelder IC.. The cost of illness of atrial fibrillation: a systematic review of the recent literature. Europace 2011;13:1375–1385. - PubMed
1. Oldgren J, Healey JS, Ezekowitz M, Commerford P, Avezum A, Pais P, Zhu J, Jansky P, Sigamani A, Morillo CA, Liu L, Damasceno A, Grinvalds A, Nakamya J, Reilly PA, Keltai K, Van Gelder IC, Yusufali AH, Watanabe E, Wallentin L, Connolly SJ, Yusuf S; RE-LY Atrial Fibrillation Registry Investigators. Variations in cause and management of atrial fibrillation in a prospective registry of 15,400 emergency department patients in 46 countries: the RE-LY Atrial Fibrillation Registry. Circulation 2014;129:1568–1576. - PubMed
1. Piccini JP, Stevens SR, Lokhnygina Y, Patel MR, Halperin JL, Singer DE, Hankey GJ, Hacke W, Becker RC, Nessel CC, Mahaffey KW, Fox KA, Califf RM, Breithardt G; ROCKET AF Steering Committee & Investigators. Outcomes after cardioversion and atrial fibrillation ablation in patients treated with rivaroxaban and warfarin in the ROCKET AF trial. J Am Coll Cardiol 2013;61:1998–2006. - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

K23 HL143156/HL/NHLBI NIH HHS/United States

LinkOut - more resources

Full Text Sources
Medical
- MedlinePlus Health Information
Research Materials
- NCI CPTC Antibody Characterization Program

[1] Chugh SS, Havmoeller R, Narayanan K, Singh D, Rienstra M, Benjamin EJ, Gillum RF, Kim YH, McAnulty JH Jr, Zheng ZJ, Forouzanfar MH, Naghavi M, Mensah GA, Ezzati M, Murray CJ.. Worldwide epidemiology of atrial fibrillation: a Global Burden of Disease 201 Study. Circulation 2014;129:837–847. - PMC - PubMed

[2] Chugh SS, Havmoeller R, Narayanan K, Singh D, Rienstra M, Benjamin EJ, Gillum RF, Kim YH, McAnulty JH Jr, Zheng ZJ, Forouzanfar MH, Naghavi M, Mensah GA, Ezzati M, Murray CJ.. Worldwide epidemiology of atrial fibrillation: a Global Burden of Disease 201 Study. Circulation 2014;129:837–847. - PMC - PubMed

[3] Krijthe BP, Kunst A, Benjamin EJ, Lip GY, Franco OH, Hofman A, Witteman JC, Stricker BH, Heeringa J.. Projections on the number of individuals with atrial fibrillation in the European Union, from 2000 to 2060. Eur Heart J 2013;34:2746–2751. - PMC - PubMed

[4] Krijthe BP, Kunst A, Benjamin EJ, Lip GY, Franco OH, Hofman A, Witteman JC, Stricker BH, Heeringa J.. Projections on the number of individuals with atrial fibrillation in the European Union, from 2000 to 2060. Eur Heart J 2013;34:2746–2751. - PMC - PubMed

[5] Wolowacz SE, Samuel M, Brennan VK, Jasso-Mosqueda JG, Van Gelder IC.. The cost of illness of atrial fibrillation: a systematic review of the recent literature. Europace 2011;13:1375–1385. - PubMed

[6] Wolowacz SE, Samuel M, Brennan VK, Jasso-Mosqueda JG, Van Gelder IC.. The cost of illness of atrial fibrillation: a systematic review of the recent literature. Europace 2011;13:1375–1385. - PubMed

[7] Oldgren J, Healey JS, Ezekowitz M, Commerford P, Avezum A, Pais P, Zhu J, Jansky P, Sigamani A, Morillo CA, Liu L, Damasceno A, Grinvalds A, Nakamya J, Reilly PA, Keltai K, Van Gelder IC, Yusufali AH, Watanabe E, Wallentin L, Connolly SJ, Yusuf S; RE-LY Atrial Fibrillation Registry Investigators. Variations in cause and management of atrial fibrillation in a prospective registry of 15,400 emergency department patients in 46 countries: the RE-LY Atrial Fibrillation Registry. Circulation 2014;129:1568–1576. - PubMed

[8] Oldgren J, Healey JS, Ezekowitz M, Commerford P, Avezum A, Pais P, Zhu J, Jansky P, Sigamani A, Morillo CA, Liu L, Damasceno A, Grinvalds A, Nakamya J, Reilly PA, Keltai K, Van Gelder IC, Yusufali AH, Watanabe E, Wallentin L, Connolly SJ, Yusuf S; RE-LY Atrial Fibrillation Registry Investigators. Variations in cause and management of atrial fibrillation in a prospective registry of 15,400 emergency department patients in 46 countries: the RE-LY Atrial Fibrillation Registry. Circulation 2014;129:1568–1576. - PubMed

[9] Piccini JP, Stevens SR, Lokhnygina Y, Patel MR, Halperin JL, Singer DE, Hankey GJ, Hacke W, Becker RC, Nessel CC, Mahaffey KW, Fox KA, Califf RM, Breithardt G; ROCKET AF Steering Committee & Investigators. Outcomes after cardioversion and atrial fibrillation ablation in patients treated with rivaroxaban and warfarin in the ROCKET AF trial. J Am Coll Cardiol 2013;61:1998–2006. - PubMed

[10] Piccini JP, Stevens SR, Lokhnygina Y, Patel MR, Halperin JL, Singer DE, Hankey GJ, Hacke W, Becker RC, Nessel CC, Mahaffey KW, Fox KA, Califf RM, Breithardt G; ROCKET AF Steering Committee & Investigators. Outcomes after cardioversion and atrial fibrillation ablation in patients treated with rivaroxaban and warfarin in the ROCKET AF trial. J Am Coll Cardiol 2013;61:1998–2006. - PubMed

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials