Not yet recruitingNAINTERVENTIONAL

Study of Exercise Capacity and Physical Activity in Children With Congenital Heart Disease

This study focuses on children aged 5 to 18 with congenital heart disease (CHD), a heart problem they're born with. Many children with CHD in Northern Ireland aren't as active as health experts recommend, partly because parents worry about how exercise might affect their child. Researchers spoke to parents, teachers, and coaches to understand these concerns. They found that a personalised exercise plan could help ease worries. Now, the study is testing a 12-week individualised exercise plan for children with CHD to do at home. This plan will also be shared with teachers and coaches. The goal is to see if this plan can improve the children's fitness, help them be more active, and improve their general health and happiness, while also reducing parental anxiety.

At a glance

Status

Not yet recruiting

Phase

Sponsor

University of Ulster

Enrolment target

Start

15 May 2025

Estimated completion

30 Jun 2026

Congenital Heart Disease

What is this study about?

Imagine being a child who loves to play and run around, but your parents or teachers are worried that too much activity might not be safe because you have a heart condition that you were born with. This is a common situation for many children with 'congenital heart disease' (CHD), which means they were born with a heart problem.

Health experts in the UK recommend that children aged 5 to 18 should be physically active for at least 60 minutes every day. Sadly, many children with CHD don't meet this recommendation. This study aims to help change that. Researchers noticed that parents often hold back their children from being fully active because they're unsure what's safe. This study is unique because it also involves talking to teachers and coaches to understand their worries too. By understanding everyone's concerns, the researchers hope to make it easier for children with CHD to enjoy being active.

So, what's the plan? The study is trying out a special, tailored exercise programme. This means that each child taking part will get an exercise plan made just for them, based on what they can do safely and what they enjoy. This plan will be used at home for 12 weeks, and teachers and coaches will also get a copy so they know what activities are good for each child. The main idea behind this is to see if having a clear, safe, and personalised exercise plan can help improve the children's fitness levels, get them moving more often, and ultimately make them healthier and happier.

Key takeaways

Supports children aged 5-18 with congenital heart disease (CHD).
Tests a personalised exercise plan for fitness and activity.
Aims to reduce parent and teacher worries about exercise.
Involves a 12-week home-based exercise programme.
Follow-up checks at 3 and 6 months.
Could improve overall health and happiness for children with CHD.

Who may be eligible?

This study is looking for children and young people who have a heart condition that they were born with, known as congenital heart disease (CHD). Participants need to be between 5 and 18 years old.

It's important to know that children with CHD who also have a learning disability are welcome to take part. The study wants to understand how exercise can help a wide range of young people.

However, some children won't be able to join. If a child has other significant health problems or physical disabilities that are not related to their heart condition, they won't be able to participate. This is simply to make sure the study can clearly see the effects of the exercise plan on their heart condition without other health issues making it complicated. Also, if either the child or their parents/guardians don't want to be involved, they won't be included.

Quick self-check

Is your child aged between 5 and 18 years old?
Does your child have a heart condition they were born with (congenital heart disease)?
Does your child NOT have other major health issues or physical disabilities NOT related to their heart condition?
Are you and your child willing to take part in the study?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part, your child will be assigned to a group that receives a personalised exercise plan or a group that doesn't immediately. If in the exercise plan group, your child will follow a special exercise programme designed just for them, to do at home over 12 weeks. This plan will also be shared with their teachers and coaches. Your child's fitness levels and how active they are will be checked at the start, again after 12 weeks, and then briefly at 3 and 6 months to see how things are going. The research team will also talk to you and potentially your child's teachers/coaches to understand your experiences and feelings about the exercise plan. The total duration of active participation for the exercise intervention group would be 12 weeks, with follow-up checks at 3 and 6 months.

Potential risks and benefits

The main benefit of taking part is that your child could improve their fitness, become more active, and potentially feel better overall due to the tailored exercise plan. The study also aims to reduce worries that parents and caregivers might have about their child exercising. As with any exercise, there's a small risk of minor injuries like muscle soreness, but the plans will be designed specifically for each child's safe ability level. You are free to withdraw your child from the study at any time, for any reason, without it affecting your child's medical care.

Locations (1)

Royal Belfast Hospital for Sick Children
Belfast, United Kingdom

Common questions

What is congenital heart disease (CHD)?

Congenital heart disease means your child was born with a heart problem. It can range from mild to complex.

Why is exercise important for children with CHD?

Being active helps improve heart health, fitness, and overall well-being, just like for any other child, but with careful planning for CHD.

Will the exercise plan be safe for my child?

Yes, every exercise plan is made just for your child, taking into account their specific heart condition and what they can do safely. It's designed to be beneficial.

How often will we need to visit the study team?

There will be initial assessments, a check after 12 weeks, and then follow-up checks at 3 and 6 months. Most of the activity is done at home.

What if my child has a learning disability?

Children with congenital heart disease and a learning disability are welcome and encouraged to participate in this study.

How to find out more

Naomi Bell, BSc, MSc and PhD Researcher

bell-n23@ulster.ac.uk +447738412938 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.