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Specialist cardiac services: what do young people want?

Published online by Cambridge University Press:  01 December 2008

Jo Wray  and
Linda Maynard
Jo Wray*
Affiliation:
Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
Linda Maynard
Affiliation:
Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
*
Correspondence to: Dr Jo Wray, Children’s Clinic, Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, UB9 6JH. Tel: 01895 828761; Fax: 01895 828554; E-mail: [email protected]
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Abstract

Purpose

With improvements in the surgical and medical management of children with congenital heart disease, the majority are now expected to transition into adult services. Whilst the importance of successful transition is increasingly acknowledged, previous research has identified a number of areas of concern. We therefore wished to elicit the views of young people themselves concerning their requirements from a specialist cardiac service.

Methods

Using an exploratory approach our aims were to increase awareness of the service needs and expectations of young people, identify good practice and areas where communication processes and facilities could be improved, and enhance understanding of transition between paediatric and adult services. Postal questionnaires were sent to 63 young people with congenital cardiac disease aged 17 to 20 years. Open ended questions asked for views and experiences about facilities in the paediatric and adult areas, perceptions of transition between services and suggestions for improvements. Qualitative data were transferred verbatim into electronic format to facilitate coding and theming.

Results

Thirty-eight (60.3 percent) completed questionnaires were received. A number of themes, including communication, care processes/caring interactions and environment, emerged regarding areas of satisfaction and dissatisfaction within the paediatric and adult services, together with areas for improvement and important aspects of transition.

Conclusions

Young people’s views need to be taken into account at all stages of the patient journey. They want an individualised approach to their care which recognises that they have specific emotional and practical needs. Such findings need to be incorporated into an ongoing model of care.

Keywords

Congenital heart diseaseadolescentstransition
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue 6 , December 2008 , pp. 569 - 574
Copyright
Copyright © Cambridge University Press 2008

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References

1.Seal, P, Evans, T, Blozis, S, Okinow, N, Blum, R. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 1999; 24: 259–264.Google Scholar
2.Department of Health. Report of the Paediatric and Congenital Cardiac Services Review. London: Department of Health, 2003.Google Scholar
3. Report of the British Cardiac Society Working Party: Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK. Heart 2002; 8(suppl 1): i1–i14.CrossRefGoogle Scholar
4.British Heart Foundation Statistics Database. Congenital heart disease statistics. Oxford: BHF Health Promotion Research Group, University of Oxford, 2003, www.heartstats.orgGoogle Scholar
5.Warnes, CA, Liberthson, R, Danielson, GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.Google Scholar
6.Landzberg, MJ, Murphy, DJ, Davidson, WR, et al. Task force 4: Organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1187–1193.CrossRefGoogle ScholarPubMed
7.Therrien, J, Dore, A, Gersony, W, et al. CCS Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I. Can J Cardiol 2001; 17: 940–959.Google ScholarPubMed
8.Therrien, J, Gatzoulis, M, Graham, T, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: Recommendations for the Management of Adults with Congenital Heart Disease – Part II. Can J Cardiol 2001; 17: 1029–1050.Google Scholar
9.Therrien, J, Warnes, C, Daliento, L, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease – Part III. Can J Cardiol 2001; 17: 1135–1158.Google Scholar
10. The Association for children’s palliative care. The transition care pathway. Bristol 2007.Google Scholar
11.Watson, AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 2000; 14: 469–472.Google Scholar
12.Gurvitz, MZ, Inkelas, M, Lee, M, Stout, K, Escarce, J, Chang, RK. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol 2007; 49: 875–882.Google Scholar
13.Reid, GJ, Irvine, J, McCrindle, BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004; 113: 197–205.Google Scholar
14. British Heart Foundation. We’ll tell you what we want: A DVD for teenagers with congenital heart disease. London 2005.Google Scholar
15.Royal College of Paediatrics and Child Health. Bridging the Gaps: Health care for Adolescents. London: Royal College of Paediatrics and Child Health, 2003.Google Scholar
16.Miles, M, Huberman, M. Qualitative Data Analysis: an expanded source book. Sage, London, 1994.Google Scholar
17.Strauss, A, Corbin, J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory 1998. Thousand Oakes, Sage Publications, CA, USA, 1998.Google Scholar
18. Department of Health. Getting the right start: National Service Framework (NSF) for Children, Young People and Maternity Services – Standard for Hospital Services. London, 2003.Google Scholar
19.McCurdy, C, DiCenso, A, Boblin, S, Ludwin, D, Bryant-Lukoslus, D, Bosompra, K. There to here: young adult patients’ perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant 2006; 16: 309–316.Google Scholar
20.Hudsmith, LE, Thorne, SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007; 92: 927–930.Google Scholar
21.Tong, E, Sparacino, PS. Special management issues for adolescents and young adults with congenital heart disease. Crit Care Nurs Clin North Am 1994; 6: 199–214.CrossRefGoogle Scholar
22.Tong, EM, Kools, S. Health care transition for adolescents with congenital heart disease: patient and family perspectives. Nurs Clin N Am 2004; 39: 727–740.CrossRefGoogle ScholarPubMed
23.Fox, A. Physicians as barriers to successful transitional care. Int J Adolesc Med Health 2002; 14: 3–7.CrossRefGoogle ScholarPubMed
24.Dore, A, de Guise, P, Mercier, LA. Transition of care to adult congenital heart centres: what do patients know about their condition? Can J Cardiol 2002; 18: 141–146.Google Scholar
25.Higgins, SS, Tong, E. Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 2003; 18: 93–98.CrossRefGoogle ScholarPubMed