FLEXI Study
Research type
Research Study
Full title
Fontan Lifestyle-EXercise Investigation (FLEXI): a mixed-methods study
IRAS ID
278020
Contact name
Attilio Lotto
Contact email
Sponsor organisation
Alder Hey Children's Hospital
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary
Around 1 in 100 children are born with some form of abnormality in their heart structure or function, known as Congenital Heart Disease (CHD). There is a range of different conditions, some requiring more intervention than others. A small group of these conditions result in the child presenting with a bluish tinge to their skin. This is called cyanosis, and occurs because their oxygenated and deoxygenated blood mix together. Depending on the abnormality, some of these children require a series of three staged operations to rebuild part of the heart and redirect the way the blood flows. The last stage of these operations is called the Fontan procedure and it is offered to children who only have one functioning ventricle (‘pumping’ chamber). Treatment has advanced significantly but this group face many obstacles during life, with physical limitations in daily activities and reduced exercise capacity. Physical activity is an important part of normal childhood development having beneficial effects on cardiovascular health, and thus particularly important for children who have had a Fontan procedure. Children with CHD, regardless of the severity of their condition, are less physically active and have a higher amount of time spent inactive than their peers; something that worsens with age and that is more evident in patients who have had a Fontan procedure. Limitations in taking part in physical activities particularly affects girls, those with siblings, those who are younger, and those from areas of higher deprivation, and are worsened by parental anxiety. Engaging this group in physical activity is complex and there is no consensus on what constitutes optimal physical activity levels. The aim of the study is to explore how living with complex CHD and with the functional limitations of the Fontan procedure affects physical activity and social functioning/lifestyle of children and their families.
Summary of Results
KEY FINDINGS
• We asked seven children (aged between 5 to 16 years) with hypoplastic left heart syndrome who had completed the Fontan procedure (a series of staged operations) and their parents, how their heart condition affects their participation in physical activity.
• We found that children participating in the study were meeting the national recommendations on physical activity levels (at least 60 minutes of moderate to vigorous physical activity per day).
• However, we also found that despite these children were able to meet the physical activity recommendation, parental fears and anxiety were also potentially limiting their participation in physical activity.WHO CARRIED OUT THIS RESEARCH AND WHY?
This study was part of a collaboration among clinicians and researchers from the University of Liverpool, Liverpool John Moores University and Alder Hey Children’s Hospital Liverpool.
This project received funding from The Hugh Greenwood Legacy for Children’s Health Research Fund (Grant:B19).BACKGROUND
Hypoplastic left heart syndrome is a severe heart defect where the left side of the heart is underdeveloped; it accounts for 2-3% of all congenital heart disease. It may lead to heart failure and death in the first week of life if left untreated. The treatment for this condition involves a series of 3-staged surgical operations, of which the last one is know as the Fontan procedure.
We know that physical activity plays an important role in improving overall fitness and quality of life in both children and adults. However, children affected by congenital heart disease, and more specifically by hypoplastic left heart syndrome, face more barriers in participating in physical activity due to social stigma. Also, there is no current consensus among healthcare professionals of what constitutes an optimal amount of physical activity for these children.
We wanted to gather the children and parents’ perspective on physical activity participation and see how active children with hypoplastic left heart syndrome are. We also wanted to explore how the family lifestyle affected participation in physical activity for these children.WHAT DID WE DO?
We recruited children aged 5 to 16 years affected by hypoplastic left heart syndrome and who had completed the Fontan procedure, together with their parents and siblings. We recruited participants under the care of Alder Hey Children’s Hospital (Liverpool, UK) and via social media. Seven children (3 girls and 4 boys) and seven parents participated. Only one sibling participated in the study, but we could not include their data due to the risk of their potential identification.
Each child participating in the study received an activity monitor (a type of pedometer to monitor their activity level during the day), a physical activity diary (to keep track of the activities done during the day), and a questionnaire where the children could tell us in their own words if they had any difficulties participating in physical activity. A similar questionnaire, was also provided to their siblings (if any) to seek their views. We also asked the parents of these children to complete an interview, to discuss the impact that their child’s condition has on the child’s physical activity participation and more generally on the family’s lifestyle.WHAT DID WE FIND?
We found that children participating in our study were quite active and were exceeding the national physical activity recommendation of at least 60 minutes of moderate to vigorous physical activity per day. They reported an average daily time of 153 minutes spent in moderate to vigorous physical activity, with no difference in the time spent in physical activity between week days and weekend days.
However, these children also reported being sedentary for more than half (57.5%) of their waking hours. This level was similar to children without a chronic health condition, which shows a general negative trend of children spending more and more time in sedentary behaviour. Sedentary behaviour could be more detrimental to children with hypoplastic left heart syndrome whose cardiovascular fitness is already impacted by their condition.
The data collected by the interviews with parents suggests that children with hypoplastic left heart syndrome have better physical fitness after the completion of the Fontan procedure, allowing them to be more active after the surgery. The parents that participated in the interviews were quite positive toward physical activity participation for their child, however they also reported some fears and anxiety that may limit physical activity participation for their child. Parents also reported that external people (such as school teachers) may limit physical activity for their child, often due to lack of knowledge of the disease and how it can affect the child’s physical fitness.WHAT ARE THE STRENGTHS AND LIMITATIONS OF THE STUDY?
• We measured the physical activity level of children participating in our study by using activity monitors, which are widely used to assess physical activity in health research.
• We explored the views of both children and their parents to better identify potential barriers and facilitators toward physical activity participation for children with hypoplastic left heart syndrome.
• Unfortunately, we had a small group of children with hypoplastic left heart syndrome in our study, mainly recruited from a single hospital and from a specific region in North West England.
• It may be that only very active children were willing to participate in our study, or that the level of physical activity of these children was influenced by knowing they were observed as part of this study. Therefore, we cannot exclude that some biases may be present in the results of our study.WHAT NEXT?
This study was accepted for publication in an international medical journal called ‘Cardiology in the Young’. We aim to disseminate the results of our study to a broad range of cardiac surgeons, cardiologists and parents of children with hypoplastic left heart syndrome to educate them on the safety of physical activity for these children. We plan to expand our work to found out the best physical activity for children with hypoplastic left heart syndrome, identifying what type of physical activity, frequency and intensity is safe. This will allow to define appropriate physical activity guidelines for these children, helping them to improve their physical fitness and their overall quality of life.REC name
Wales REC 4
REC reference
20/WA/0144
Date of REC Opinion
27 May 2020
REC opinion
Further Information Favourable Opinion