A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions.

OBJECTIVE To assess a novel method for assessing risk and providing advice about activity to children and young people with congenital cardiac disease and their parents. DESIGN AND SETTING Questionnaire survey in outpatient clinics at a tertiary centre dealing with congenital cardiac disease, and 6 peripheral clinics. INTERVENTIONS Children or their parents completed a brief questionnaire. If this indicated a desire for help, or a serious mismatch between advised and real level of activity, they were telephoned by a physiotherapist. MAIN MEASURES OF OUTCOME: Knowledge about appropriate levels of activity, and identification of the number exercising at an unsafe level, the number seeking help, and the type of help required. RESULTS 253/258 (98.0%) questionnaires were returned, with 119/253 (47.0%) showing incorrect responses in their belief about their advised level of exercise; 17/253 (6.7%) had potentially dangerous overestimation of exercise. Asked if they wanted advice 93/253 (36.8%) said "yes", 43/253 (17.0%) "maybe", and 117/253 (46.2%) "no". Of those contacted by phone to give advice, 72.7% (56/77) required a single contact and 14.3% (11/77) required an intervention that required more intensive contact lasting from 2 up to 12 weeks. Of the cohort, 3.9% (3/77) were taking part in activities that put them at significant risk. CONCLUSIONS There is a significant lack of knowledge about appropriate levels of activity, and a desire for further advice, in children and young people with congenital cardiac disease. A few children may be at very significant risk. These needs can be identified, and clinical risk reduced, using a brief self-completed questionnaire combined with telephone follow-up from a suitably knowledgeable physiotherapist.