title: A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions.
abstract: 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.
  
  
  METHODS
  Questionnaire survey in outpatient clinics at a tertiary centre dealing with congenital cardiac disease, and 6 peripheral clinics.
  
  
  METHODS
  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.
authors.affiliation: Paediatric Cardiology Department, Leeds General Infirmary, Leeds, United Kingdom. lynne.kendall@leedsth.nhs.uk
authors.forename: Lynne
authors.initials: L
authors.lastname: Kendall
authors.forename: Jonathan M
authors.initials: JM
authors.lastname: Parsons
authors.forename: Patricia
authors.initials: P
authors.lastname: Sloper
authors.forename: Robert J P
authors.initials: RJ
authors.lastname: Lewin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000554:Ambulatory Care Facilities; D002648:Child; D002983:Clinical Competence / Q000592:standards*; D005260:Female; D005500:Follow-Up Studies; D006330:Heart Defects, Congenital / Q000523:psychology* / Q000628:therapy; D006801:Humans; D008297:Male; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D011379:Prognosis; D013811:Psychotherapeutic Processes; D012189:Retrospective Studies; D018570:Risk Assessment; D012309:Risk-Taking; D011795:Surveys and Questionnaires / Q000592:standards*