Skip to main content
    • Aa
    • Aa

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

  • Lynne Kendall (a1), Jonathan M. Parsons (a1), Patricia Sloper (a2) and Robert J. P. Lewin (a3)

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.

Corresponding author
Correspondence to: Lynne Kendall, Ward 10, Paediatric Cardiology Department, Leeds General Infirmary, Leeds LS1 3EX, United Kingdom. Tel: +44 0 113 392 7310; Fax: +44 0 113 392 8474; E-mail:
Hide All


Cheuk DKL, Wong SMY, Choi YP, Chau AK, Cheung YF. Parents' understanding of their child's congenital heart disease. Heart 2004; 90: 435439.
Moons P, De Volder E, Budts W, et al. What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education. Heart 2001; 86: 7480.
Kendall L, Sloper P, Lewin RJP, Parsons JM. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2003; 13: 1119.
Kendall L, Sloper P, Lewin RJP, Parsons JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 2027.
Kamphuis M, Ottenkamp J, Vliegen HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356362.
Swan L, Hillis WS. Exercise prescription in adults with congenital heart disease: a long way to go. Heart 2000; 83: 685687.
Maron BJ, Chaitman BR, Ackerman MJ, et al. Recommendations for physical activity and recreational sports participation for young patients with genetic cardiovascular diseases. Circulation 2004; 109: 28072816.
Fletcher GF, Balady G, Blair SN, et al. Statement on exercise: benefits and recommendations for physical activity programs for all Americans: a statement for health professionals by the Committee on Exercise and Cardiac Rehabilitation of the Council on Clinical Cardiology, American Heart Association. Circulation 1996; 94: 857862.
Thompson PD, Buchner D, Piña IL, et al. Exercise and physical activity in the prevention and treatment of atherosclerotic cardiovascular disease: a statement from the Council on Clinical Cardiology (subcommittee on Exercise, Rehabilitation, and Prevention) and the Council on Nutrition, Physical Activity, and Metabolism (subcommittee on Physical Activity). Circulation 2003; 107: 31093116.
Graham TP, Driscoll DJ, Gersony WM, Newburger JW, Rocchini A, Towbin A. 36th Bethesda Conference: Eligibility recommendations for competitive athletes with cardiovascular abnormalities. Task Force 2: Congenital heart disease. J Am Coll Cardiol 2005; 45: 13261333.
Gutgesell HP, Gessner IH, Vetter VL, Yabek SM, Norton Jr JB. Recreational and occupational recommendations for young patients with heart disease. A Statement for Physicians by the Committee on Congenital Cardiac Defects of the Council on Cardiovascular Disease in the Young, American Heart Association. Circulation 1986; 74: 1195A1198A.
Pelliccia A, Fagard R, Bjornstad HH, et al. Recommendations for competitive sports participation in athletes with cardiovascular disease. Eur Heart J 2005; 26: 14221445.
Kennedy I. The Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984–1995. 2001; .
Department of Health. Paediatric and Congenital Cardiac Services Review. 2003/0519. .
Lewin RJP, Kendall L, Sloper P. Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom. Cardiol Young 2002; 12: 412414.
Danford DA. Parents of children with congenital heart disease lack knowledge needed for optimal care. American Academy of Pediatrics Grand Rounds 2004; 11: 6162.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Cardiology in the Young
  • ISSN: 1047-9511
  • EISSN: 1467-1107
  • URL: /core/journals/cardiology-in-the-young
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Full text views

Total number of HTML views: 2
Total number of PDF views: 28 *
Loading metrics...

Abstract views

Total abstract views: 152 *
Loading metrics...

* Views captured on Cambridge Core between September 2016 - 20th October 2017. This data will be updated every 24 hours.