Health‐Related Quality of Life and Its Association With Outcomes in Adults With Congenital Heart Disease and Heart Failure: Insight From FRESH‐ACHD Registry

Author:

Ly Reaksmei1ORCID,Karsenty Clément2,Amedro Pascal34ORCID,Cohen Sarah5ORCID,Domanski Olivia6ORCID,Godart Francois7,Radojevic Jelena57,Vaksmann Guy8ORCID,Naccache Nicole9,Boubrit Anissa1,Bataille Vincent10ORCID,Hascoet Sébastien5ORCID,Ladouceur Magalie111ORCID

Affiliation:

1. Adult Congenital Heart Disease Unit Hôpital Européen Georges Pompidou Centre de Référence des Malformations Cardiaques Congénitales Complexes Assistance Publique‐Hôpitaux de Paris Paris University Paris France

2. Congenital Cardiology Unit Children Hospital CHU Toulouse Institut Des Maladies Métaboliques et Cardiovasculaires Université de Toulouse INSERM U1048, I2MC Toulouse France

3. Department of Paediatric and Adult Congenital Cardiology Bordeaux University Hospital Bordeaux France

4. Inserm, U1045, IHU Liryc Bordeaux Cardio‐Thoracic Research Centre Electrophysiology and Heart Modelling Institute University of Bordeaux Fondation Bordeaux Université Pessac France

5. Division of Congenital Heart Disease, Expert Center for Complex Congenital Heart Disease (M3C Network) Marie Lannelongue Hospital Groupe Hospitalier Paris Saint Joseph Inserm UMRs‐999 Paris‐Saclay University Le Plessis Robinson France

6. CHRU de Lille University Lille Nord‐de‐France Faculté de médecine, hôpital cardiologique, service des maladies cardiovasculaires infantiles et congénitales Lille France

7. Cardiologie Congenitale Strasbourg France

8. Department of Congenital Heart Disease Hôpital Privé de La Louvière Lille France

9. Commission des Registres French Society of Cardiology Paris France

10. Department of Cardiology Rangueil Toulouse University Hospital University Paul Sabatier Toulouse France

11. INSERM U970 Paris Centre de Recherche Cardiovasculaire Paris France

Abstract

Background Quality of Life (QoL) is a prognostic factor in heart failure (HF) of patients with acquired cardiac disease. The aim of this study was to determine the predictive value of QoL on outcomes in adults with congenital heart disease (ACHD) and HF. Methods and Results Quality of life of 196 adults with congenital heart disease with clinical heart failure (HF) (mean age: 44.3±13.8 years; 51% male; 56% with complex congenital heart disease; 47% New York Heart Association class III/IV) included in the prospective multicentric registry FRESH‐ACHD (French Survey on Heart Failure−Adult with Congenital Heart Disease) was assessed using the 36‐Item Short Form Survey (SF‐36), a patient‐reported survey. The primary end point was defined by all‐cause death, HF‐related hospitalization, heart transplantation, and mechanical circulatory support. At 12 months, 28 (14%) patients reached the combined end point. Patients with low quality of life experienced major adverse events more frequently (logrank P =0.013). On univariate analysis, lower score at physical functioning (hazard ratio [HR], 0.98 [95% CI, 0.97–0.99]; P =0.008), role limitations related to physical health (HR, 0.98 [95% CI, 0.97–0.99]; P =0.008), and general health dimensions of the SF‐36 (HR, 0.97 [95% CI, 0.95–0.99]; P =0.002) were significantly predictive of cardiovascular events. However, after multivariable analysis, SF‐36 dimensions were no longer significantly associated with the primary end point. Conclusions Patients with congenital heart disease with HF and poor quality of life experience severe events more frequently, making quality of life assessment and rehabilitation programs essential to alter their trajectory.

Publisher

Ovid Technologies (Wolters Kluwer Health)

Subject

Cardiology and Cardiovascular Medicine

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