Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-18T10:34:41.009Z Has data issue: false hasContentIssue false
  • English
  • Français

Disease-specific knowledge and information preferences of young patients with congenital heart disease

Published online by Cambridge University Press:  29 April 2013

Wiebke Lesch ,
Katharina Specht ,
Anke Lux ,
Michael Frey ,
Elisabeth Utens  and
Ulrike Bauer
Wiebke Lesch*
Affiliation:
Deutsches Herzzentrum Berlin, Competence Network for Congenital Heart Defects, Berlin, Germany
Katharina Specht
Affiliation:
Deutsches Herzzentrum Berlin, Competence Network for Congenital Heart Defects, Berlin, Germany
Anke Lux
Affiliation:
Institute for Biometry and Medical Informatics, Otto-von-Guericke-University Magdeburg, Magdeburg, Germany
Michael Frey
Affiliation:
Deutsches Herzzentrum Berlin, Competence Network for Congenital Heart Defects, Berlin, Germany
Elisabeth Utens
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center, Rotterdam, The Netherlands
Ulrike Bauer
Affiliation:
Deutsches Herzzentrum Berlin, Competence Network for Congenital Heart Defects, Berlin, Germany
*
Correspondence to: W. Lesch, Competence Network for Congenital Heart Defects, Augustenburger Platz 1, 13353 Berlin, Germany. Tel: +49 30 40048783; Fax: +49 30 40048781; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Aims

Persons suffering from congenital heart defects require lifelong specialist medical care. Failure to attend cardiological follow-up examinations and risky health behaviour in the transition phase may cause severe medical complications. A good level of disease-specific knowledge enhances compliance. Therefore, the study's aim was to investigate: (a) the level of disease-specific knowledge, (b) information preferences, and (c) sources of information for children, adolescents, and young adults regarding their illness.

Methods and results

In all, 596 patients, aged 10–30 years, participated in this cross-sectional survey study (response rate: 53%). All patients were already enrolled in the German National Register for Congenital Heart Defects. The main outcome measures included disease-specific knowledge, information preferences, and information sources regarding patients’ individual cardiac condition. The patients demonstrated a major knowledge gap concerning their illness and how to live with it. For all three age groups, patients’ information needs were unmet on nearly half of the topics of interest. Children's information needs were comparable to those of adolescents and adults concerning several important topics, for example, work/career, sports. Information preferences varied according to age and gender, rather than disease severity. The most important sources of information were physicians (71.0%), family and friends (58.2%), and the Internet (37.5%).

Conclusion

The study revealed substantial knowledge gaps, indicating a need for structured multidisciplinary patient education interventions. These interventions should start as early as in childhood and help patients manage their condition and assume responsibility for their own health, so that the transition phase runs smoothly.

Keywords

Congenital heart defectspsychosocialchildrenadolescentsknowledgeinformation
Type
Original Articles
Information
Cardiology in the Young , Volume 24 , Issue 2 , April 2014 , pp. 321 - 330
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Sable, C, Foster, E, Uzark, K, et al. On behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease. Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues: A Scientific Statement From the American Heart Association. Circulation 2011; 123: 1454–1485.CrossRefGoogle Scholar
2. Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, et al. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–167.CrossRefGoogle ScholarPubMed
3. Kovacs, AH, Verstappen, A. The whole adult congenital heart disease patient. Prog Cardiovasc Dis 2011; 53: 247–253.CrossRefGoogle ScholarPubMed
4. Dore, A, de Guise, P, Mercier, LA. Transition of care to adult congenital heart centres: what do patients know about their heart condition? Can J Cardiol 2002; 18: 141–146.Google Scholar
5. Tong, EM, Sparacino, PS, Messias, DK, et al. Growing up with congenital heart disease: the dilemmas of adolescents and young adults. Cardiol Young 1998; 8: 303–309.Google Scholar
6. Mackie, AS, Ionescu-Ittu, R, Therrien, J, et al. Children and adults with congenital heart disease lost to follow-up: who and when? Circulation 2009; 120: 302–309.CrossRefGoogle ScholarPubMed
7. Wacker, A, Kaemmerer, H, Hollweck, R, et al. Outcome of operated and unoperated adults with congenital cardiac disease lost to follow-up for more than five years. Am J Cardiol 2005; 95: 776–779.Google Scholar
8. Moons, P, Hilderson, D, Van Deyk, K. Implementation of transition programs can prevent another lost generation of patients with congenital heart disease. Eur J Cardiovasc Nurs 2008; 7: 259–263.Google Scholar
9. Bauersfeld, U. Transition, Transfer und Kooperation bei Patienten mit angeborenen Herzfehlern – kontinuierliche Kollaboration der pädiatrischen und adulten Kardiologie. [Transition, transfer and cooperation in patients with congenital heart disease – continuous collaboration of pediatric and adult cardiology]. Kardiovaskuläre Medizin 2006; 9: 336–341.Google Scholar
10. Yeung, E, Kay, J, Roosevelt, GE, et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65.Google Scholar
11. Somerville, J. Managment of adults with congenital heart disease: an increasing problem. Annu Rev Med 1997; 48: 283–293.CrossRefGoogle ScholarPubMed
12. Hudsmith, LE, Thorne, SA. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007; 92: 927–930.Google Scholar
13. Clarizia, NA, Chahal, N, Manlhiot, C, et al. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can J Cardiol 2009; 25: 317–322.CrossRefGoogle Scholar
14. Veldtman, GR, Matley, SL, Kendall, L, et al. Illness understanding in children and adolescents with heart disease. Heart 2000; 84: 395–397.CrossRefGoogle ScholarPubMed
15. 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 structures patient education. Heart 2001; 86: 74–80.Google Scholar
16. Van Damme, S, Van Deyk, K, Budts, W, et al. Patient knowledge of and adherence to oral anticoagulation therapy after mechanical heart-valve replacement for congenital or acquired valve defects. Heart Lung 2011; 40: 139–146.Google Scholar
17. Van Deyk, K, Pelgrims, E, Troost, E, et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 2010; 106: 1803–1807.CrossRefGoogle ScholarPubMed
18. Chessa, M, De Rosa, G, Pardeo, M, et al. Illness understanding in adults with congenital heart disease. Ital Heart J 2005; 6: 895–899.Google ScholarPubMed
19. Roos-Hesselink, JW, Meijboom, FJ, Spitaels, SE, et al. Excellent survival and low incidence of arrhythmias, stroke and heart failure long-term after surgical ASD closure at young age. A prospective follow-up study of 21–33 years. Eur Heart J 2003; 24: 190–197.Google Scholar
20. Warnes, CA, Liberthson, R, Danielson, GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. JACC 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
21. Kantoch, MJ, Collins-Nakai, RL, Medwid, S, et al. Adult patients’ knowledge about their congenital heart disease. Can J Cardiol 1997; 13: 641–645.Google ScholarPubMed
22. Cetta, F, Warnes, CA. Adults with congenital heart disease – patient knowledge of endocarditis prophylaxis. Mayo Clin Proc 1995; 70: 50–54.CrossRefGoogle ScholarPubMed
23. Kamphuis, M, Verloove-Vanhorick, SP, Vogels, T, et al. Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart disease. Cardiol Young 2002; 12: 266–271.CrossRefGoogle ScholarPubMed
24. Dearani, JA, Connolly, HM, Martinez, R, et al. Caring for adults with congenital cardiac disease: successes and challenges for 2007 and beyond. Cardiol Young 2007; 17: 87–96.Google Scholar
25. Garson, A Jr, Benson, RS, Ivler, L, et al. Parental reactions to children with congenital heart disease. Child Psychiatry Hum Dev 1978; 9: 86–94.Google Scholar
26. Kendall, L, Parsons, JM, Sloper, P, et al. A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions. Cardiol Young 2007; 17: 151–157.Google Scholar
27. Rönning, H, Nielsen, NE, Swahn, E, et al. Educational needs in adults with congenitally malformed hearts. Cardiol Young 2008; 18: 473–479.CrossRefGoogle ScholarPubMed
28. Rönning, H, Nielsen, NE, Swahn, E, et al. Description and initial evaluation of an educational and psychosocial support model for adults with congenitally malformed hearts. Pat Educ Counsel 2011; 83: 247–251.CrossRefGoogle ScholarPubMed
29. Taddeo, D, Egedy, M, Frappier, JY. Adherence treatment in adolescents. Paediatr Child Health 2008; 13: 19–24.Google Scholar
30. Kendall, L, Sloper, P, Lewin, RJ, et al. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2003; 13: 11–19.Google Scholar
31. van Rijen, EH, Utens, EM, Roos-Hesselink, JW, et al. Psychosocial functioning of the adult with congenital heart disease: a 20–33 years follow-up. Eur Heart J 2003; 24: 673–683.Google Scholar
32. van Staa, A. Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Pat Educ Counsel 2011; 82: 455–464.CrossRefGoogle ScholarPubMed
33. Birks, Y, Sloper, P, Lewin, R, et al. Health expect. Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2007; 10: 16–29.Google Scholar
34. Cooper, HC, Booth, K, Gill, G. Patients’ perspectives on diabetes health care education. Health Educ Res 2003; 18: 191–206.CrossRefGoogle ScholarPubMed
35. DiMatteo, MR. The role of effective communication with children and their families in fostering adherence to pediatric regimens. Pat Educ Counsel 2004; 55: 339–344.CrossRefGoogle ScholarPubMed