Physical Activity Toolkit – A guide for young people with a congenital heart condition and their...

Physical Activity Toolkit – A guide for young people with a congenital heart condition and their families C.A. Williams 1,2 , R. Horn 1,2 , A. Graham Stuart 2 Children’s Health & Exercise Research Centre, University of Exeter, UK 1 ; Bristol Heart Institute, UK 2 . Methods Conclusions Introduction Aim References Phase 1 Contact: Prof. Craig Williams ([email protected]) or Richard Horn ([email protected]) Congenital heart disease (CHD) can be defined as any structural or functional defect of the heart that is present at birth. The incidence of congenital heart disease in the UK is 1 in 180 live births [1]. Many children affected require multiple surgical interventions. Several studies have demonstrated the efficacy of exercise training programmes in increasing exercise capacity in children with CHD [2]. Furthermore, participation in sporting activities has also been shown to correlate with improved quality of life [3]. The majority of children with CHD are able to lead a relatively normal life and can participate in most sports and physical activities with few restrictions [4]. However, for some children certain modes and intensities of physical exercise are potentially harmful and should be avoided. Studies have shown that many young people with CHD do not know: • what intensity of exercise is safe and appropriate for them • if they have any physical activity restrictions • if there are particular activities that are recommended for them In the absence of clear, specific advice many patients assume that all exercise is safe, despite their cardiac condition, and participate in activities that are potentially detrimental to their health [5,6,7]. The aim of our project was to develop a ‘toolkit’ of resources to improve the provision of physical activity advice to young people with a congenital heart condition, their families and other relevant groups. The project was instigated and funded by the charity Heart Research UK, as part of their ‘Helping Little Hearts’ campaign. A questionnaire was developed to survey current national practices in exercise prescription for children with CHD. This was distributed to: Paediatric Cardiologists, Specialist Nurses and Paediatricians with expertise in cardiology. 68 questionnaires were completed and returned. Responses were received from every paediatric cardiac centre in the UK. A literature search [8] was conducted to identify: • All consensus statements and published guidelines on physical activity participation for individuals with CHD. • Studies investigating exercise training programmes, physical activity levels and psychological aspects of physical activity participation in children with CHD. Semi-structured interviews were conducted with children and parents to gain insights into the main barriers for participation in physical activities and the key areas of concern. Phase 2 The main themes for inclusion in the resources were identified. It was decided to develop four main elements: • A comprehensive information booklet for older adolescents and their families • A leaflet providing basic information to younger children (<13 y) • An information leaflet, providing practical advice to school staff • A ‘Physical activity recommendations form’ to facilitate prescription of exercise and provision of specific, individually-tailored written advice by healthcare professionals. A first draft of the toolkit was completed in January 2014. This subsequently went through several iterations, with refinements proposed by healthcare professionals and the families of young people with CHD. Readability, assessed using the Flesch-Kincaid Grade Level test, was found to be 9.1, indicating that the toolkit can be read and understood by children 14 y and over. The first edition of the Toolkit was printed and distributed in early May 2014. Phase 3 Over the next four months 200 copies of the toolkit will be issued during outpatient appointments in the paediatric cardiac unit at Bristol Children’s Hospital. A further 600 will be issued at Birmingham Children’s Hospital, Leeds Royal Infirmary and Cardiff and Vale Hospital. A feedback questionnaire is provided with each pack. The responses will be used to assess the toolkit and to identify ways of further improving the resources provided. A second edition is planned for the end of the year. It is anticipated that the toolkit will then be made available to all cardiac units in the UK. Phase 4 The ‘Physical Activity Toolkit’ provides a central resource intended to increase patient knowledge and understanding and promote safe participation in appropriate sports and physical activities. We hope that it will also reduce anxiety for patients, families and school staff; thereby removing a significant barrier to physical activity for young people with CHD. [1] Townsend N, et al., (2013) Children and young people statistics 2013. British Heart Foundation: London. [2] Tikkanen, A.U., et al., Cardiology in the Young, 2012. 22(3): p. 241-250. [3] Knowles, R.L., et al., Archives of Disease in Childhood, 2014: p. archdischild-2013-305130. [4] Takken, T., et al., European Journal of Preventive Cardiology, 2012. 19(5): p. 1034-1065. [5] Kendall, L., et al., Cardiology in the Young, 2007. 17(02): p. 151-157. [6] Longmuir, P.E. and B.W. McCrindle, American Heart Journal, 2009. 157(5): p. 853-859. [7] Swan, L. and W.S. Hillis, Heart, 2000. 83(6): p. 685-687. [8] Pieles, G.E., et al., Archives of Disease in Childhood, 2014. 99(4): p. 380-385. Launch The toolkit was officially launched on 19th June 2014 at Bristol Children’s Hospital. The launch was attended by: Barbara Harpham (Director of Heart Research UK), Clare Elsley (silver medallist at the Indoor Netball World Championships 2014) , a family who have benefited from the toolkit and the authors. A press release was issued and interviews were conducted for radio, television and newspaper. Key findings: • 70% of cardiologists consider published guidelines when providing exercise advice. However, only 12% of other health care professionals take published guidelines into consideration. • Most clinicians do not routinely assess patients’ knowledge regarding what exercise is appropriate. • Over a third of clinicians never provide patients with written advice about exercise (fig.1). Figure 1. Responses to the survey question How often are patients given written advice about exercise?

Physical Activity Toolkit – A guide for young people with a congenital heart condition and their...

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