The ACTIVELY study is an observational study taking place across multiple hospitals which aims to evaluate exercise testing practices and physical activity in children and adolescents who are diagnosed with inherited arrhythmias. 

What is the reason for this study?

Inherited arrhythmias are associated with a risk of sudden cardiac death (SCD) due to the development of ventricular arrhythmias, sometimes occurring during exercise. Inherited arrhythmias include Long QT Syndrome (LQTS) and Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT). Both conditions cause abnormalities in the hearts electrical function and can cause ventricular arrhythmias during exercise.

As a result, affected people are advised to avoid high intensity exercise to reduce the risk of suffering symptoms which could lead to collapse or sudden death. Most affected people are prescribed medications to reduce the risk of symptoms occurring during exercise and at other times.

We use exercise testing (ET) with an exercise treadmill to assess affected children’s physical response to stress and exercise. Children with LQTS and CPVT perform yearly exercise tests as part of routine care. The exercise test helps us to:

• Evaluate the child’s heart rhythm and any symptoms or arrhythmias occurring during exercise.
• Estimate how effective medications prescribed to control heart rhythm are.
• Provide exercise guidance (also known as exercise prescription).  

However, we don’t know exactly how much exercise and physical activity affected children are taking part in daily or weekly or how well exercise testing correlates with daily physical activity and exercise levels.

Who can take part and what does the study involve?

We are aiming to recruit children aged 6-16 years of age who are already under the care of one of the hospitals (Royal Brompton Hospital, Great Ormond Street Hospital and Evelina Children’s Hospital), who are diagnosed with LQTS and CPVT.

We are also recruiting children who are being investigated for an inherited heart condition as a healthy control group at one of the three hospitals.

Participants who would like to take part in the study will be recruited during routine outpatient appointments or ahead of their planned exercise test. Parents of the children, and children who are able to participate in the consent process will be asked to provide consent at the time of the exercise test.  

Participants will be asked to complete a short pre-study questionnaire and a physical activity motivation questionnaire. Demographic data such as age, weight, height, gender, diagnosis, and medications will be recorded. We will also ask you and your child to complete two short, validated Quality of Life (QoL) questionnaires. Results of the exercise test will be recorded electronically for analysis.

Once the exercise test is finished, participants will be fitted with a wearable heart monitor, an Actiheart monitor, which is fitted on the chest and will record their heart rate and any changes in heart rhythm and will track their physical activities over two weeks. Participants can undertake their usual activity whilst wearing the Actiheart monitor.

Participants will also be given a PRO-Diary to record the activities they are taking part in during the two-week monitoring period. The PRO-Diary is worn on the wrist and uses a pre-programmed  questionnaire to allow easy recording of exercise activity.

Participants will also be asked to include the type, length of activity and the intensity level (low, moderate, intense – easy, somewhat hard, very hard). A pictorial scoring scale (called the Rate of Perceived Exertion Scale) will be provided to help participants estimate their intensity levels during exercise.

A physical activity questionnaire and factors affecting physical activity and data recording questionnaire will also be provided to be completed at the end of the two-week monitoring period. We will also ask you and your child to repeat one of the QoL questionnaires. Some parental input with recording PRO-Diary exercise activity and completing the questionnaire will be required for younger children.

How to get involved

If your child would like to be involved or you would like to find out more about the study, please contact the Chief Investigator, Catherine Renwick on 07968 534 941 or via email. 

Project details