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Quality of life in surgically palliated complex congenital heart disease
F A Casey1, B G Craig, H C Mulholland
1Department of Paediatric Cardiology, Royal Belfast Hospital for Sick Children.
Insights
Surgical palliation improves activity levels for children with complex cyanotic congenital heart disease. Formal exercise testing is crucial as parental estimates of exercise tolerance are often inaccurate.
Area of Science:
- Pediatric Cardiology
- Congenital Heart Disease
- Surgical Palliation
Background:
- Complex cyanotic congenital heart disease significantly impacts children's quality of life.
- Surgical palliation aims to improve symptoms and functional capacity in affected children.
Purpose of the Study:
- To evaluate the outcomes of surgical palliation in children with complex cyanotic congenital heart disease.
- To assess ongoing symptoms, exercise tolerance, and participation in daily activities post-surgery.
Main Methods:
- Evaluation of 26 children with complex cyanotic congenital heart disease post-surgical palliation.
- Assessment of ongoing symptoms, activity scores, and graded treadmill exercise testing.
- Comparison of exercise tolerance with age and sex-matched controls.
Main Results:
- Most children (89%) experienced moderate exercise limitation, with 11% severely limited.
- Common issues included breathlessness (92%), respiratory infections (35%), and leg cramps (31%).
- Parents underestimated their child's exercise tolerance in 80% of cases.
Conclusions:
- Palliative surgery enables children with single functional ventricles to participate in most childhood activities.
- Formal exercise testing provides valuable data for clinical decision-making regarding further interventions.
- Subjective assessments of exercise tolerance in this population are unreliable.
Abstract:
The outcome of surgical palliation was evaluated in 26 children with complex cyanotic congenital heart disease. Outcome was examined in terms of ongoing symptoms, exercise tolerance, and the ability to participate in normal childhood activities. An activity score was calculated and each child performed graded treadmill exercise testing. Breathlessness (24 (92%) children), respiratory infections (nine (35%) children), and leg cramps (eight 31%) children) were the most common physical disorders. Although formal exercise testing showed a clear reduction in exercise tolerance compared with age and sex matched controls, palliation had allowed 23 (89%) to function with moderate exercise limitation, three (11%) having severely limited activity. Parents underestimated the child's exercise tolerance in 80% of cases. Sixteen (62%) patients attended school full time, eight (31%) attended part time, and two (8%) received only home tuition. Palliative surgery can give children with a single functional ventricle a level of activity which allows them to take part in most childhood activities. Subjective estimates of exercise tolerance are inaccurate in this group of children, and formal exercise testing can contribute useful information to decision making about further surgical intervention.