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

Published online by Cambridge University Press:  26 February 2007

Lynne Kendall ,
Jonathan M. Parsons ,
Patricia Sloper  and
Robert J. P. Lewin
Lynne Kendall
Affiliation:
Paediatric Cardiology Department, Leeds General Infirmary, Leeds, United Kingdom
Jonathan M. Parsons
Affiliation:
Paediatric Cardiology Department, Leeds General Infirmary, Leeds, United Kingdom
Patricia Sloper
Affiliation:
Social Policy Research Unit, University of York, United Kingdom
Robert J. P. Lewin
Affiliation:
British Heart Foundation Care and Education Research Group, University of York, United Kingdom
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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. 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.

Keywords

Congenital heart defectsphysical activityexercise prescriptionrisk behaviourphysiotherapymultidisciplinary team
Type
Original Article
Information
Cardiology in the Young , Volume 17 , Issue 2 , April 2007 , pp. 151 - 157
Copyright
© 2007 Cambridge University Press

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References

Cheuk DKL, Wong SMY, Choi YP, Chau AK, Cheung YF. Parents' understanding of their child's congenital heart disease. Heart 2004; 90: 435–439.Google Scholar
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: 74–80.Google Scholar
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: 11–19.Google Scholar
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: 20–27.Google Scholar
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: 356–362.Google Scholar
Swan L, Hillis WS. Exercise prescription in adults with congenital heart disease: a long way to go. Heart 2000; 83: 685–687.Google Scholar
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: 2807–2816.Google Scholar
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: 857–862.Google Scholar
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: 3109–3116.Google Scholar
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: 1326–1333.Google Scholar
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: 1195A–1198A.Google Scholar
Pelliccia A, Fagard R, Bjornstad HH, et al. Recommendations for competitive sports participation in athletes with cardiovascular disease. Eur Heart J 2005; 26: 1422–1445.Google Scholar
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: 412–414.Google Scholar
Danford DA. Parents of children with congenital heart disease lack knowledge needed for optimal care. American Academy of Pediatrics Grand Rounds 2004; 11: 61–62.Google Scholar