Physical Activity Toolkit A guide for young people with a congenital heart condition and their families

C.A. Williams1,2, R. Horn 1,2, A. Graham Stuart2 Childrens Health & Exercise Research Centre, University of Exeter, UK 1; Bristol Heart Institute, UK 2.

Methods

Conclusions

Introduction Aim

References

Phase 1

Contact: Prof. Craig Williams (c.a.williams@exeter.ac.uk) or Richard Horn (r.horn@exeter.ac.uk)

Congenital heart disease (CHD) can be defined as any structural or functional defect of the heart that is present at birth. The

incidence of congenital heart disease in the UK is 1 in 180 live births [1]. Many children affected require multiple surgical

interventions. Several studies have demonstrated the efficacy of exercise training programmes in increasing exercise capacity in

children with CHD [2]. Furthermore, participation in sporting activities has also been shown to correlate with improved quality of life

[3]. The majority of children with CHD are able to lead a relatively normal life and can participate in most sports and physical

activities with few restrictions [4]. However, for some children certain modes and intensities of physical exercise are potentially

harmful and should be avoided.

Studies have shown that many young people with CHD do not know:

what intensity of exercise is safe and appropriate for them

if they have any physical activity restrictions

if there are particular activities that are recommended for them

In the absence of clear, specific advice many patients assume that all exercise is safe, despite their cardiac condition, and

participate in activities that are potentially detrimental to their health [5,6,7].

The aim of our project was to develop a toolkit of resources to improve the provision of physical activity advice to young people with a congenital heart condition, their families and other relevant groups.

The project was instigated and funded by the charity Heart Research UK, as part of their Helping Little Hearts campaign.

A questionnaire was developed to survey current national practices in exercise prescription for children with CHD.

This was distributed to: Paediatric Cardiologists, Specialist Nurses and Paediatricians with expertise in cardiology.

68 questionnaires were completed and returned. Responses were received from every paediatric cardiac centre in the UK.

A literature search [8] was conducted to identify:

All consensus statements and published guidelines on physical activity participation for individuals with CHD.

Studies investigating exercise training programmes, physical activity levels and psychological aspects of physical activity participation in children with CHD.

Semi-structured interviews were conducted with children and parents to gain insights into the main barriers for participation

in physical activities and the key areas of concern.

Phase 2

The main themes for inclusion in the resources were identified. It was decided to

develop four main elements:

A comprehensive information booklet for older adolescents and their families

A leaflet providing basic information to younger children (