QUALITY-OF-LIFE IN SURGICALLY PALLIATED COMPLEX CONGENITAL HEART-DISEASE

The outcome of surgical palliation was evaluated in 26 children with c omplex cyanotic congenital heart disease. Outcome was examined in term s of ongoing symptoms, exercise tolerance, and the ability to particip ate in normal childhood activities. An activity score was calculated a nd each child performed graded treadmill exercise testing. Breathlessn ess (24 (92%) children), respiratory infections (nine (35%) children), and leg cramps (eight 31%) children) were the most common physical di sorders. Although formal exercise testing showed a clear reduction in exercise tolerance compared with age and sex matched controls, palliat ion 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%) patient s attended school full time, eight (31%) attended part time, and two ( 8%) received only home tuition. Palliative surgery can give children w ith a single functional ventricle a level of activity which allows the m to take part in most childhood activities. Subjective estimates of e xercise tolerance are inaccurate in this group of children, and formal exercise testing can contribute useful information to decision making about further surgical intervention.