Patient-Reported Outcomes After Tetralogy of Fallot Repair

Adrienne H Kovacs; Gerald Lebovic; Stavroula Raptis; Samuel Blais; Christopher A Caldarone; Nagib Dahdah; Frédéric Dallaire; Christian Drolet; Jasmine Grewal; Camille L Hancock Friesen; Edward Hickey; Gauri Rani Karur; Paul Khairy; Benedetta Leonardi; Michelle Keir; Brian W McCrindle; Syed Najaf Nadeem; Ming-Yen Ng; Ashish H Shah; Edythe B Tham; Judith Therrien; Andrew E Warren; Isabelle F Vonder Muhll; Alexander Van de Bruaene; Kenichiro Yamamura; Michael E Farkouh; Rachel M Wald

doi:10.1016/j.jacc.2023.03.385

Patient-Reported Outcomes After Tetralogy of Fallot Repair

J Am Coll Cardiol. 2023 May 16;81(19):1937-1950. doi: 10.1016/j.jacc.2023.03.385.

Authors

Adrienne H Kovacs¹, Gerald Lebovic², Stavroula Raptis², Samuel Blais³, Christopher A Caldarone⁴, Nagib Dahdah⁵, Frédéric Dallaire³, Christian Drolet⁶, Jasmine Grewal⁷, Camille L Hancock Friesen⁸, Edward Hickey⁴, Gauri Rani Karur⁹, Paul Khairy¹⁰, Benedetta Leonardi¹¹, Michelle Keir¹², Brian W McCrindle¹³, Syed Najaf Nadeem¹⁴, Ming-Yen Ng¹⁵, Ashish H Shah¹⁶, Edythe B Tham¹⁷, Judith Therrien¹⁸, Andrew E Warren¹⁹, Isabelle F Vonder Muhll²⁰, Alexander Van de Bruaene²¹, Kenichiro Yamamura²², Michael E Farkouh²³, Rachel M Wald²⁴

Affiliations

¹ Equilibria Psychological Health, Toronto, Ontario, Canada; Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada.
² Applied Health Research Centre, Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, Ontario, Canada.
³ Division of Pediatrics, University of Sherbrooke, Sherbrokke, Quebec, Canada; Research Centre of the Sherbrooke University Hospital, Sherbrooke, Quebec, Canada.
⁴ Division of Cardiovascular Surgery, Texas Children's Hospital, Houston, Texas, USA.
⁵ Division of Pediatric Cardiology, Sainte-Justine University Hospital Center, Montreal, Quebec, Canada.
⁶ Division of Pediatric and Congenital Cardiology, Department of Pediatrics, Laval University Hospital, Quebec City, Quebec, Canada.
⁷ Yasmin and Amir Virani Provincial Adult Congenital Heart Program, Vancouver, British Columbia, Canada.
⁸ Division of Cardiovascular Surgery, IWK Health Centre, Halifax, Nova Scotia, Canada.
⁹ Joint Department of Medical Imaging, University Health Network, Toronto, Ontario, Canada.
¹⁰ Adult Congenital Center, Montreal Heart Institute, University of Montreal, Montreal, Quebec, Canada.
¹¹ Department of Pediatric Cardiology, Cardiac Surgery and Heart Lung Transplantation, Bambino Gesù Hospital and Research Institute, Scientific Institute for Research, Hospitalization, and Health Care, Rome, Italy.
¹² Southern Alberta Adult Congenital Heart Disease Clinic, Libin Cardiovascular Institute, University of Calgary, Calgary, Alberta, Canada.
¹³ Labatt Family Heart Centre, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
¹⁴ Division of Cardiology, Queen Elizabeth II Health Sciences Centre, Halifax, Nova Scotia, Canada.
¹⁵ Department of Diagnostic Radiology, School of Clinical Medicine, The University of Hong Kong, Hong Kong; Department of Medical Imaging, The University of Hong Kong-Shenzhen Hospital, Shenzhen, China.
¹⁶ Division of Cardiology, University of Manitoba, Winnipeg, Manitoba, Canada.
¹⁷ Pediatric Cardiology, Stollery Children's Hospital, Edmonton, Alberta, Canada.
¹⁸ MAUDE Unit (McGill University Health Network/Beth Raby Adult Congenital Heart Disease Clinic, Jewish General Hospital), Montreal, Quebec, Canada.
¹⁹ Division of Pediatric Cardiology, Dalhousie University, Halifax, Nova Scotia, Canada.
²⁰ Division of Cardiology, Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada.
²¹ Division of Cardiology, University Hospitals Leuven, Leuven, Belgium.
²² Department of Pediatrics, Kyushu University Hospital, Fukuoka, Japan.
²³ Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada.
²⁴ Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Ontario, Canada; Joint Department of Medical Imaging, University Health Network, Toronto, Ontario, Canada; Labatt Family Heart Centre, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Division of Cardiology, Hadassah Medical Center, Hebrew University of Jerusalem, Jerusalem, Israel. Electronic address: rachel.wald@uhn.ca.

PMID: 37164527
DOI: 10.1016/j.jacc.2023.03.385

Abstract

Background: Comprehensive assessment of tetralogy of Fallot (TOF) outcomes extends beyond morbidity and mortality to incorporate patient-reported outcomes (PROs), including quality of life (QOL) and health status (HS).

Objectives: This study explored PROs in adolescents and adults with TOF and delineated variables associated with PROs.

Methods: This was a cross-sectional observational study within a larger prospective registry of adolescents and adults with repaired TOF and moderate or greater pulmonary regurgitation from North America, Europe, and Asia. Participants completed PROs, including a QOL linear analogue scale (QOL-LAS) and an HS visual analogue scale (HS-VAS). Scores were classified according to age cohorts: <18, 18 to 25, 26 to 40, and >40 years.

Results: The study included 607 patients (46.3% female; median age 28.5 years). Median QOL-LAS scores (0-100) were similar across age cohorts (85, 80, 80, 80; P = 0.056). Median HS-VAS scores (0-100) were lowest for the oldest cohort (77) compared with the 3 younger cohorts (85, 80, 80) (P = 0.004). With advancing age, there were increased reports of poor mobility (P < 0.001) and pain or discomfort (P = 0.004); problems in these dimensions were reported by 19.1% and 37.2% of patients aged >40 years, respectively. Of factors associated with superior PROs on multivariable regression modeling (ie, being White, being nonsyndromic, having employment, and having better left ventricular function; P < 0.05), asymptomatic status (functional class I) was the variable associated with the greatest number of QOL and HS measures (P < 0.001).

Conclusions: Strategies to improve TOF outcomes should consider PROs alongside conventional clinical variables. Factors associated with poorer PROs represent opportunities to intervene to improve the lives of patients with TOF.

Keywords: patient-reported outcomes; quality of life; tetralogy of Fallot.

Publication types

Observational Study
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Cardiac Surgical Procedures* / methods
Cross-Sectional Studies
Female
Humans
Male
Pulmonary Valve Insufficiency*
Quality of Life
Tetralogy of Fallot* / surgery

Grants and funding

MOP 119353/CIHR/Canada