Physical Activity in Children With Inherited Cardiac Diseases

Physical Activity in Children With Inherited Cardiac Diseases : a Qualitative

Use lay language.

Current guidelines regarding physical activity in patients with inherited arrhythmia and cardiomyopathy are mostly dedicated to adult patients, with a special focus on sports competition. Their application to the pediatric population has been scarcely evaluated.

Physical activity is well known for its health benefits but may be dangerous in this population, which leads to confusion within the medical community and among patients. Actual physical activity of children with such inherited cardiac disorders is unknown.

This study aimed to assess the level of physical activity in children with inherited arrhythmia and cardiomyopathy, and the adherence to the current European guidelines on the subject. Secondary objectives aimed to assess through a qualitative analysis the impact of the disease on physical activity and daily life in this population.

The level of physical activity and adherence to current guidelines will be determined from interviews between the patient and the principal investigator. Each patient will be questioned in order to explore the experiences, motivations and feelings of participants regarding physical activity. The standardized questionnaire was created by the principal investigator and members of the clinical research team.

The investigators believe that many children practice physical activity outside the current guidelines and hope to identify the main determinants of physical activity in this population.

Study Overview

• Status: Completed
• Conditions: Dilated Cardiomyopathy; Hypertrophic Cardiomyopathy; Brugada Syndrome; Long QT Syndrome; Catecholaminergic Polymorphic Ventricular Tachycardia

• Study Type: Observational
• Enrollment (Actual): 28

Contacts and Locations

Study Locations

• France
  • Montpellier, France, 34295
    • UH Montpellier

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 6 years to 18 years (Child, Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

This study will take place in two paediatric tertiaty hospitals : the paediatric and congenital cardiology department of Montpellier university hospital and the paediatric cardiology and rehabilitation unit of St-Pierre institute in Palavas-Les-Flots, France.

Children aged from 6 to 18 years old with genetic and/or clinical diagnosis of inherited cardiomyopathies (hypertrophic cardiomyopathy, dilated cardiomyopathy and arrythmogenic right ventricular cardiomyopathy) or inherited primary arrhythmia syndrome (long QT syndrome, brugada syndrome and catecholaminergic polymorphic ventricular tachycardia) are eligible to participate in this study. Each subject accepting to participate during the annual follow up consultation will be enrolled

Description

Inclusion criteria:

Children from 6 to 18 years old with clinical and/or genetic diagnosis of :

• Long QT syndrome
• Brugada syndrome
• Catecholaminergic polymorphic ventricular tachycardia
• Hypertrophic cardiomyopathy
• Dilated cardiomyopathy
• Arrythmogenic right ventricular cardiomyopathy

Exclusion criteria:

• Presence of extra cardiac co-morbidity with motor or psychological repercussions hingering physical activity
• Refusal from children or parent to participate in the study

Study Plan

How is the study designed?

Design Details

• Observational Models: Case-Only
• Time Perspectives: Cross-Sectional

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Proportion of children with inheritec cardiac disorders respecting the current European guidelines on sports cardiology and exercise (ESC 2020).	Patient's physical activity will be analysed to evaluate the adherence to current European guidelines regarding physical activity. Patients will be categorized into 3 groups, upon the level of adherence to the guidelines (complete adherence, partial adherence et no adherence).	1 day

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Qualitative analysis evaluating the psychological and emotional impact of physical activity restriction on daily life.	Patients will be interviewed by the principal investigator for 20 to 30 minutes with a focus on physical activity, in order to collect motivations, feelings and discourse of the patient, classified in main themes (positive, negative or neutral). No score is used in this study: The secondary outcome is a qualitative analysis.	1 day

Collaborators and Investigators

• Sponsor: University Hospital, Montpellier
• Collaborators: Paediatric Cardiology and Rehabilitation Unit, St-Pierre Institute

Publications and helpful links

General Publications

• Boisson A, De La Villeon G, Huguet H, Abassi H, Pasquie JL, Lavastre K, Matecki S, Guillaumont S, Requirand A, Calderon J, Amedro P. Physical activity and aerobic fitness in children with inherited cardiac diseases. Arch Cardiovasc Dis. 2021 Nov;114(11):727-736. doi: 10.1016/j.acvd.2021.07.004. Epub 2021 Oct 27.

Study record dates

Study Major Dates

• Study Start (Actual): May 1, 2020
• Primary Completion (Actual): December 30, 2020
• Study Completion (Actual): February 1, 2021

Study Registration Dates

• First Submitted: November 24, 2020
• First Submitted That Met QC Criteria: November 24, 2020
• First Posted (Actual): December 2, 2020

Study Record Updates

• Last Update Posted (Actual): May 26, 2022
• Last Update Submitted That Met QC Criteria: May 19, 2022
• Last Verified: May 1, 2022

More Information

Terms related to this study

• Keywords: Physical activity; Arrythmogenic right ventricular cardiomyopathy; Inherited cardiac disease; Peadiarics
• Additional Relevant MeSH Terms: Pathologic Processes; Cardiovascular Diseases; Disease; Congenital Abnormalities; Genetic Diseases, Inborn; Arrhythmias, Cardiac; Aortic Valve Disease; Heart Valve Diseases; Cardiac Conduction System Disease; Heart Defects, Congenital; Cardiovascular Abnormalities; Cardiomegaly; Laminopathies; Aortic Stenosis, Subvalvular; Aortic Valve Stenosis; Heart Diseases; Syndrome; Tachycardia; Tachycardia, Ventricular; Cardiomyopathies; Cardiomyopathy, Dilated; Cardiomyopathy, Hypertrophic; Brugada Syndrome; Long QT Syndrome
• Other Study ID Numbers: RECHMPL20_0118

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: Undecided
• IPD Plan Description: NC

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No