Placing patient-reported outcomes at the centre of cardiovascular clinical practice: implications for quality of care and management

Author:

Moons Philip123ORCID,Norekvål Tone M45ORCID,Arbelo Elena678ORCID,Borregaard Britt910ORCID,Casadei Barbara1112ORCID,Cosyns Bernard13ORCID,Cowie Martin R14ORCID,Fitzsimons Donna15ORCID,Fraser Alan G16ORCID,Jaarsma Tiny1718ORCID,Kirchhof Paulus192021ORCID,Mauri Josepa22ORCID,Mindham Richard23ORCID,Sanders Julie2425ORCID,Schiele Francois26ORCID,Torbica Aleksandra27ORCID,Zwisler Ann Dorthe92829ORCID

Affiliation:

1. KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven, Kapucijnenvoer 35 PB7001, 3000 Leuven, Belgium

2. Institute of Health and Care Sciences, University of Gothenburg, Arvid Wallgrens backe 1, 413 46 Gothenburg, Sweden

3. Department of Paediatrics and Child Health, University of Cape Town, Klipfontein Rd, Rondebosch, 7700 Cape Town, South Africa

4. Department of Heart Disease, Haukeland University Hospital, Haukelandsveien 22, 5009 Bergen, Norway

5. Department of Clinical Science, Faculty of Medicine, University of Bergen, Jonas Lies veg, 875021 Bergen, Norway

6. Cardiology Department, Hospital Clínic, Universitat de Barcelona, C/Villarroel 170, 08036 Barcelona, Spain

7. Institut d’Investigació August Pi i Sunyer (IDIBAPS). Rosselló 149-153, 08036 Barcelona, Spain

8. Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV), Av. Monforte de Lemos, 3-5. Pabellón 11. Planta 0, 28029 Madrid, Spain

9. Department of Cardiology, Odense University Hospital, J.B. Winsløws Vej 4, 5000 Odense, Denmark

10. Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19, 5000 Odense, Denmark

11. Division of Cardiovascular Medicine, RDM, University of Oxford; Headley Way, Headington Oxford OX3 9DU, UK

12. NIHR Biomedical Research Centre, Headley Way, Headington Oxford OX3 9DU, UK

13. Department of Cardiology, University Hospital Brussels, Laarbeeklaan 101, 1090 Jette, Belgium

14. Royal Brompton Hospital & School of Cardiovascular Medicine, Faculty of Medicine & Lifesciences, King’s College London, Sydney St, London SW3 6NP, UK

15. School of Nursing & Midwifery, Queens University Belfast, 97 Lisburn Road, Belfast | BT9 7BL, Northern Ireland

16. School of Medicine, Cardiff University, Heath Park, Cardiff CF14 4XW, UK

17. Department of Medicine, Health and Caring Sciences, Linköping University, Campus Norrköping, 601 74 Norrköping, Sweden

18. Nursing Science, Julius Center, University Medical Centre Utrecht, Universiteitsweg 100, 3584 CG Utrecht, The Netherlands

19. Department of Cardiology, University Heart and Vascular Center Hamburg, Martinistrasse 52, D-20246 Hamburg, Germany

20. German Center for Cardiovascular Research (DZHK), partner site Hamburg/Kiel/Lübeck, Martinistrasse 52, D-20246 Hamburg, Germany

21. Institute of Cardiovascular Sciences, College of Medical and Dental Sciences, University of Birmingham, Edgbaston Birmingham B15 2TT, UK

22. Department of Cardiology, Hospital Universitari Germans Trias i Pujol, Carretera de Canyet, s/n, 08916 Badalona, Barcelona, Spain

23. European Society of Cardiology (ESC) Patient Forum, 2035 route des colles, CS 80179 Biot, 06903 Sophia Antipolis Cedex, France

24. St Bartholomew’s Hospital, Barts Health NHS Trust, West Smithfield, London EC1A 7BE, UK

25. William Harvey Research Institute, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK

26. Department of Cardiology, University Hospital Besancon, 3 Bd Alexandre Fleming, 25030 Besançon, France

27. Centre for Research on Health and Social Care Management (CERGAS), Bocconi University, Via Sarfatti, 10 20136 Milan, Italy

28. REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital, Vestergade 17, 5800 Nyborg, Denmark

29. Department of Clinical Research , University of Southern Denmark, Campusvej 55, DK-5230 Odense , Denmark

Abstract

Abstract Patient-reported outcomes (PROs) provide important insights into patients’ own perspectives about their health and medical condition, and there is evidence that their use can lead to improvements in the quality of care and to better-informed clinical decisions. Their application in cardiovascular populations has grown over the past decades. This statement describes what PROs are, and it provides an inventory of disease-specific and domain-specific PROs that have been developed for cardiovascular populations. International standards and quality indices have been published, which can guide the selection of PROs for clinical practice and in clinical trials and research; patients as well as experts in psychometrics should be involved in choosing which are most appropriate. Collaborations are needed to define criteria for using PROs to guide regulatory decisions, and the utility of PROs for comparing and monitoring the quality of care and for allocating resources should be evaluated. New sources for recording PROs include wearable digital health devices, medical registries, and electronic health record. Advice is given for the optimal use of PROs in shared clinical decision-making in cardiovascular medicine, and concerning future directions for their wider application.

Publisher

Oxford University Press (OUP)

Subject

Cardiology and Cardiovascular Medicine

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