International Journal of Cardiology Congenital Heart Disease (Oct 2021)
Pain in adults with congenital heart disease - An international perspective
- Allison Leibold,
- Erin Eichler,
- Sukyung Chung,
- Philip Moons,
- Adrienne H. Kovacs,
- Koen Luyckx,
- Silke Apers,
- Corina Thomet,
- Werner Budts,
- Junko Enomoto,
- Maayke A. Sluman,
- Jou-Kou Wang,
- Jamie L. Jackson,
- Paul Khairy,
- Stephen C. Cook,
- Shanthi Chidambarathanu,
- Luis Alday,
- Erwin Oechslin,
- Katrine Eriksen,
- Mikael Dellborg,
- Malin Berghammer,
- Bengt Johansson,
- Andrew S. Mackie,
- Samuel Menahem,
- Maryanne Caruana,
- Gruschen Veldtman,
- Alexandra Soufi,
- Kamila White,
- Edward Callus,
- Shelby Kutty,
- Susan M. Fernandes
Affiliations
- Allison Leibold
- Office of PA Education, Stanford University, School of Medicine, Stanford, CA, USA
- Erin Eichler
- Office of PA Education, Stanford University, School of Medicine, Stanford, CA, USA
- Sukyung Chung
- Quantitative Sciences Unit, Department of Medicine, Stanford University School of Medicine, Palo Alto, CA, USA
- Philip Moons
- KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa
- Adrienne H. Kovacs
- Toronto Congenital Cardiac Center for Adults, University Health Network, University of Toronto, Toronto, Canada; Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA
- Koen Luyckx
- KU Leuven School Psychology and Development in Context, KU Leuven, Leuven, Belgium; UNIBS, University of the Free State, Bloemfontein, South Africa
- Silke Apers
- KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium
- Corina Thomet
- Center for Congenital Heart Disease, Department of Cardiology, Inselspital - Bern University Hospital, University of Bern, Bern, Switzerland
- Werner Budts
- Division of Congenital and Structural Cardiology, University Hospitals Leuven, Leuven, Belgium; KU Leuven Department of Cardiovascular Sciences, KU Leuven, Leuven, Belgium
- Junko Enomoto
- Department of Education, Toyo University, Tokyo, Japan
- Maayke A. Sluman
- Coronel Institute of Occupational Health, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands; Department of Cardiology, Jeroen Bosch Hospital, ‘s Hertogenbosch, the Netherlands
- Jou-Kou Wang
- Department of Pediatrics, National Taiwan University Hospital, Taipei, Taiwan
- Jamie L. Jackson
- Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA
- Paul Khairy
- Adult Congenital Heart Center, Montreal Heart Institute, Université de Montréal, Montreal, Canada
- Stephen C. Cook
- Indiana University Health Adult Congenital Heart Disease Program, Indianapolis, IN, USA
- Shanthi Chidambarathanu
- Pediatric Cardiology, Frontier Lifeline Hospital (Dr. K. M. Cherian Heart Foundation), Chennai, India
- Luis Alday
- Division of Cardiology, Hospital de Niños, Córdoba, Argentina
- Erwin Oechslin
- Toronto Congenital Cardiac Center for Adults, University Health Network, University of Toronto, Toronto, Canada
- Katrine Eriksen
- Adult Congenital Heart Disease Center, Oslo University Hospital - Rikshospitalet, Oslo, Norway
- Mikael Dellborg
- KU Leuven Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden; Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Sweden
- Malin Berghammer
- Department of Health Sciences, University West, Trollhättan, Sweden; Department of Paediatrics, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden
- Bengt Johansson
- Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden
- Andrew S. Mackie
- Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Canada
- Samuel Menahem
- Monash Heart, Monash Medical Centre, Monash University, Melbourne, Australia
- Maryanne Caruana
- Department of Cardiology, Mater Dei Hospital, Birkirkara Bypass, Malta
- Gruschen Veldtman
- Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
- Alexandra Soufi
- Department of Cardiac Rehabilitation, Médipôle Lyon-Villeurbanne, Lyon, France
- Kamila White
- Adult Congenital Heart Disease Center, Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, MO, USA
- Edward Callus
- Clinical Psychology Service, IRCCS Policlinico San Donato, Milan, Italy; Department of Biomedical Sciences for Health, Università degli Studi di Milano, Milan, Italy
- Shelby Kutty
- Adult Congenital Heart Disease Center University of Nebraska Medical Center/ Children's Hospital and Medical Center, Omaha, NE, USA; Taussig Heart Center, Johns Hopkins School of Medicine, Baltimore, MD, USA
- Susan M. Fernandes
- Office of PA Education, Stanford University, School of Medicine, Stanford, CA, USA; Department of Medicine, Division of Cardiovascular Medicine, Stanford University, School of Medicine, Palo Alto, CA, USA; Department of Pediatrics, Division of Pediatric Cardiology, Stanford University, School of Medicine, Palo Alto, CA, USA; Corresponding author. Stanford University School of Medicine, Office of PA Education, 1265 Welch Road, Suite 100, Stanford, CA, 94305, USA.
- Journal volume & issue
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Vol. 5
p. 100200
Abstract
Background: Patients with adult congenital heart disease (ACHD) have many risk factors for chronic pain such as prior cardiac interventions and adult comorbidities. However, the prevalence of chronic pain has not been well described in this population. We sought to determine the prevalence of pain in a large international cohort of patients with ACHD. Methods: Data from the APPROACH-IS dataset was utilized for this study which includes 4028 patients with ACHD from 15 different countries. The prevalence of pain was assessed under the health status patient reported outcome domain utilizing the EuroQol-5D 3 level version tool. Multivariable logistic regression was used to assess differences across countries in pain, taking into account country-level random effects for clustering across observations within each country. Results: A total of 3832 patients with ACHD met the study criteria, median age 32 years [IQR 25, 42], 52.6% females. The prevalence of at least moderate pain was reported by 28.9% (95% CO 27.5 = 30.3%) of participants. Pain was associated with country of origin, age, gender, background, education and marital status as well as several clinical variables including disease complexity, cardiac device presence, history of heart failure, psychiatric conditions and presence of other medical conditions. Those with pain had lower levels of perceived health and a lower quality of life score. Conclusion: Pain in patients with ACHD is common, impacting nearly one-third of patients. Given the far reaching implications of pain in patients with ACHD, further study of pain characteristics and treatment management appear warranted.
