Patient-reported outcomes in the aging population of adults with congenital heart disease: results from APPROACH-IS

Author:

Moons Philip1234ORCID,Luyckx Koen56ORCID,Thomet Corina17ORCID,Budts Werner89ORCID,Enomoto Junko10ORCID,Sluman Maayke A1112ORCID,Yang Hsiao Ling13ORCID,Jackson Jamie L14ORCID,Khairy Paul15ORCID,Cook Stephen C16ORCID,Chidambarathanu Shanthi17ORCID,Alday Luis18ORCID,Oechslin Erwin19ORCID,Eriksen Katrine20ORCID,Dellborg Mikael21ORCID,Berghammer Malin32223ORCID,Johansson Bengt24ORCID,Mackie Andrew S25ORCID,Menahem Samuel26ORCID,Caruana Maryanne27ORCID,Veldtman Gruschen28ORCID,Soufi Alexandra29ORCID,Fernandes Susan M30ORCID,White Kamila31ORCID,Callus Edward3233ORCID,Kutty Shelby3435ORCID,Kovacs Adrienne H19ORCID,Alday Luis,Maisuls Héctor,Vega Betina,Menahem Samuel,Eaton Sarah,Wang Qi Feng,Larion Ruth,Budts Werner,Deyk Kristien Van,Apers Silke,Goossens Eva,Rassart Jessica,Luyckx Koen,Moons Philip,Rempel Gwen,Mackie Andrew,Ballantyne Ross,Rankin Kathryn,Norris Colleen,Taylor Dylan,Vondermuhll Isabelle,Windram Jonathan,Heggie Pamela,Lasiuk Gerri,Khairy Paul,Proietti Anna,Dore Annie,Mercier Lise-Andrée,Mongeon François-Pierre,Marcotte François,Ibrahim Reda,Mondésert Blandine,Côté Marie-Claude,Kovacs Adrienne,Oechslin Erwin,Bandyopadhyay Mimi,Soufi Alexandra,Filippo Sylvie Di,Sassolas François,Bozio André,Chareyras Cécile,Chidambarathanu Shanthi,Farzana Farida,Lakshmi Nitya,Callus Edward,Quadri Emilia,Chessa Massimo,Campioni Giovanna,Giamberti Alessandro,Enomoto Junko,Mizuno Yoshiko,Caruana Maryanne,Grech Victor,Vella Sheena,Mifsud Anabel,Borg Neville,Chircop Daniel,Balbi Matthew Mercieca,Critien Rachel Vella,Farrugia James,Gatt Yanika,Muscat Darlene,Eriksen Katrine,Estensen Mette-Elise,Dellborg Mikael,Berghammer Malin,Mattsson Eva,Strandberg Anita,Karlström-Hallberg Pia,Johansson Bengt,Kronhamn Anna-Karin,Schwerzman Markus,Thomet Corina,Huber Margrit,Wang Jou-Kou,Lu Chun-Wei,Yang Hsiao-Ling,Hua Yu Chuan,Mulder Barbara,Sluman Maayke,Post Marco,Pieper Els,Peels Kathinka,Waskowsky Marc,Veldtman Gruschen,Faust Michelle,Lozier Colin,Reed Christy,Hilfer Jamie,Daniels Curt,Jackson Jamie,Kutty Shelby,Chamberlain Carolyn,Warta Sara,Cook Stephen,Hindes Morgan,Cedars Ari,White Kamila,Fernandes Susan,Romfh Anitra,MacMillen Kirstie,

Affiliation:

1. KU Leuven Department of Public Health and Primary Care, KU Leuven - University of Leuven , Kapucijnenvoer 35, Box 7001, B-3000 Leuven , Belgium

2. Institute of Health and Care Sciences, University of Gothenburg , Gothenburg , Sweden

3. Centre for Person-Centred Care (GPCC), University of Gothenburg , Gothenburg , Sweden

4. Department of Paediatrics and Child Health, University of Cape Town , Cape Town , South Africa

5. School Psychology and Child and Adolescent Development, KU Leuven - University of Leuven , Leuven , Belgium

6. UNIBS, University of the Free State , Bloemfontein , South Africa

7. Center for Congenital Heart Disease, Inselspital - Bern University Hospital, University of Bern , Bern , Switzerland

8. Division of Congenital and Structural Cardiology, University Hospitals Leuven , Leuven , Belgium

9. KU Leuven Department of Cardiovascular Sciences, KU Leuven - University of Leuven , Leuven , Belgium

10. Department of Education, Toyo University , Tokyo , Japan

11. Department of Cardiology, Amsterdam UMC, University of Amsterdam , Amsterdam , the Netherlands

12. Department of Cardiology, Jeroen Bosch Hospital , ‘s Hertogenbosch , the Netherlands

13. School of Nursing, College of Medicine, National Taiwan University , Taipei , Taiwan

14. Center for Biobehavioral Health, Nationwide Children’s Hospital , Columbus, OH , USA

15. Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal , Montreal , Canada

16. Adult Congenital Heart Disease Program, Indiana University Health , Indianapolis, IN , USA

17. Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation) , Chennai , India

18. Division of Cardiology, Hospital de Niños , Córdoba , Argentina

19. Toronto Adult Congenital Heart Disease Program, University Health Network, University of Toronto , Toronto , Canada

20. Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet , Oslo , Norway

21. Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg , Sweden

22. Department of Health Sciences, University West , Trollhättan , Sweden

23. Department of Paediatrics, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital , Gothenburg , Sweden

24. Department of Public Health and Clinical Medicine, Umeå University , Umeå , Sweden

25. Division of Cardiology, Stollery Children’s Hospital, University of Alberta , Edmonton , Canada

26. Monash Heart, Monash Medical Centre, Monash University , Melbourne , Australia

27. Department of Cardiology, Mater Dei Hospital , Birkirkara Bypass , Malta

28. Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center , Cincinnati, OH , USA

29. Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne , Lyon , France

30. Adult Congenital Heart Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care , Palo Alto, CA , USA

31. Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri , Saint Louis, MO , USA

32. Clinical Psychology Service, IRCCS Policlinico San Donato , Milan , Italy

33. Department of Biomedical Sciences for Health, Università degli Studi di Milano , Milan , Italy

34. Adult Congenital Heart Disease Center University of Nebraska Medical Center/Children’s Hospital and Medical Center , Omaha, NE , USA

35. Taussig Heart Center, Johns Hopkins School of Medicine , Baltimore, MD , USA

Abstract

Abstract The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40–59 years and 18–39 years. Adjusted for demographic and medical characteristics, patients ≥60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40–59 years. Registration: ClinicalTrials.gov NCT02150603.

Funder

Research Fund – KU Leuven

Swedish Heart-Lung Foundation

University of Gothenburg Centre for Person-centred Care

Cardiac Children‘s Foundation

Publisher

Oxford University Press (OUP)

Subject

Advanced and Specialized Nursing,Medical–Surgical Nursing,Cardiology and Cardiovascular Medicine

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