The whole adult congenital heart disease patient

Progress in Cardiovascular Diseases

Volumn 53, Issue 4, 2011, Pages 247-253

  Kovacs, Adrienne H ^a   Verstappen, Amy ^b  

^a UNIVERSITY HEALTH NETWORK   (Canada)

^b Adult Congenital Heart Association   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ADULT CONGENITAL HEART DISEASE; AGE DISTRIBUTION; AGE SPECIFIC CARE; ARTICLE; CONGENITAL HEART DISEASE; DOCTOR PATIENT RELATION; FOLLOW UP; HEALTH CARE MANPOWER; HEALTH CARE PLANNING; HEALTH PROGRAM; HUMAN; INFORMED CONSENT; INSTITUTIONAL CARE; MEDICAL EXPERT; NATIONAL HEALTH ORGANIZATION; PARENTAL CONSENT; PATIENT CARE PLANNING; PATIENT EDUCATION; PATIENT REFERRAL; PRACTICE GUIDELINE; PSYCHOSOCIAL CARE;

ADOLESCENT; ADOLESCENT HEALTH SERVICES; ADULT; CHILD; CONTINUITY OF PATIENT CARE; HEART DEFECTS, CONGENITAL; HUMANS; LIFE STYLE; PATIENT CARE TEAM; PATIENT EDUCATION AS TOPIC; QUALITY OF LIFE; REFERRAL AND CONSULTATION; SURVIVORS;

EID: 79551502405     PISSN: 00330620     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pcad.2010.11.001     Document Type: Article

References (55)

1. Mackie A.S., 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.
2. Fernandes S.M., Verstappen A., Ackerman K., et al. Parental knowledge regarding life-long congenital cardiac care. J Am Col Cardiol 2010, 55:A43.
3. Reid G.J., Irvine M.J., McCrindle B.W., 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:e197-e205.
4. 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.
5. Yeung E., Kay J., Roosevelt G.E., et al. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008, 125:62-65.
6. Warnes C.A., Williams R.G., Bashore T.M., et al. American College of Cardiology/American Heart Association guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol 2008, 52:e1-e121.
7. Connelly M.S., Webb G.D., Somerville J., et al. Canadian consensus conference on adult congenital heart disease 1996. Can J Cardiol 1998, 14:395-452.
8. Deanfield J., Thaulow E., Warnes C.A., et al. Management of grown up congenital heart disease: the task force on the management of grown up congenital heart disease of the European Society of Cardiology. Eur Heart J 2003, 24:1035-1084.
9. Rosen D.S., Blum R.W., Britto M., et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 2003, 33:309-311. Society for Adolescent Medicine.
10. United Kingdom National Health Service Department of Health/Child Health and Maternity Services Branch. Transition: getting it right for young people. Improving the transition of young people with long term conditions from children's to adult health services. Best Pract Guidel 2006.
11. Hilderson D., Saidi A.S., Van Deyk K., et al. Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatr Cardiol 2009, 6:786-793.
12. Child J.S., Collins-Nakai R.L., Alpert J.S., et al. Task force 3: workforce description and educational requirements for the care of adults with congenital heart disease. J Am Coll Cardiol 2001, 37:1183-1187.
13. Patel M.S., Kogon B.E. Care of the adult congenital heart disease patient in the United States: a summary of the current system. Pediatr Cardiol 2010, 31:511-514.
14. Knauth A., Verstappen A., Reiss J., et al. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 2006, 24:619-629.
15. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002, 110:1304-1306. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine.
16. Moons P., Pinxten S., Dedroog D., et al. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health 2009, 44:316-322.
17. Hudsmith L.E., Thorne S.A. Transition of care from paediatric to adult services in cardiology. Arch Dis Child 2007, 92:927-930.
18. Reiss J.G., Gibson R.W., Walker L.R. Health care transition: youth, family, and provider perspectives. Pediatrics 2005, 115:112-120.
19. Kieckhefer G.M., Trahms C.M. Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs 2000, 26:354-363.
20. Arnett J.J. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 2000, 55:469-480.
21. Saidi A., Kovacs A.H. Developing a transition program from pediatric to adult-focused cardiology care: practical considerations. Congenit Heart Dis 2009, 4:204-215.
22. Reid G.J., Webb G.D., Barzel M., et al. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol 2006, 48:349-355.
23. Brandhagen D., Feldt R., Williams D.E. Long-term psychologic implications of congenital heart disease: a 25-year follow-up. Mayo Clin Proc 1991, 66:474-479.
24. Gantt L.T. Growing up heartsick: the experiences of young women with congenital heart disease. Health Care Women Int 1992, 13:241-248.
25. Kools S., Gilliss C.L., Tong E.M. Family transitions in congenital heart disease management: the impact of hospitalization in early adulthood. J Fam Nurs 1999, 5:404-425.
26. McMurray R., Kendall L., Parson J.M., et al. A life less ordinary: growing up and coping with congenital heart disease. Coronary Health Care 2001, 5:51-57.
27. Hutchinson J.W., Stafford E.M. Changing parental opinions about teen privacy through education. Pediatrics 2005, 116:966-971.
28. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics 2002, 110(6 Pt 2):1315-1321.
29. Boyle M.P., Farukhi Z., Nosky M.L. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol 2001, 32:428-436.
30. Shaw K.L., Southwood T.R., McDonagh J.E. User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology 2004, 43:770-778. British Paediatric Rheumatology Group.
31. Betz C.L., Redcay G. Dimensions of the transition service coordinator role. J Spec Pediatr Nurs 2005, 10:49-59.
32. Berg S.K., Hertz P.G. Outpatient nursing clinic for congenital heart disease patients: Copenhagen Transition Program. J Cardiovasc Nurs 2007, 22:488-492.
33. Bjornsen K.D. Health care transition in con genital heart disease: the providers' view point. Nurs Clin North Am 2004, 39:715-726.
34. Jalkut M.K., Allen P.J. Transition from pediatric to adult health care for adolescents with congenital heart disease: a review of the literature and clinical implications. Pediatr Nurs 2009, 35:381-387.
35. Scal P., Ireland M. Addressing transition to health care for adolescents with special health care needs. Pediatrics 2005, 115:1607-1612.
36. Position statement: transition to adult care for youth with special health care needs. Paediatr Child Health 2007, 12:785-793. Canadian Pediatric Society.
37. Edman J.C., Adams S.H., Park M.J., et al. Who gets confidential care? Disparities in a national sample of adolescents. J Adolesc Health 2010, 46:393-395.
38. Suris J.C., Akré C., Rutishauser C. How adult specialists deal with the principles of a successful transition. J Adolesc Health 2009, 45:551-555.
39. Van Deyk K., Moons P., Gewillig M., et al. Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care. Nurs Clin North Am 2004, 39:755-768.
40. Westwood A., Henley L., Willcox P. Transition from pediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health 1999, 35:442-445.
41. Kipps S., Bahu T., Ong K., et al. Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med 2002, 19:649-654.
42. Horner T., Liberthson R., Jellinek M.S. Psychosocial profile of adults with complex congenital heart disease. Mayo Clin Proc 2000, 75:31-36.
43. Bromberg J.I., Beasley P.J., D'Angelo E.J., et al. Depression and anxiety in adults with congenital heart disease: a pilot study. Heart Lung 2003, 32:105-110.
44. Kovacs A.H., Saidi A.S., Kuhl E.A., et al. Depression and anxiety in adults with congenital heart disease: prevalence and predictors. Int J Cardiol 2009, 137:158-164.
45. Lip GYH, Lane DA, Millane TA. Psychological interventions for depression in adolescent and adult congenital heart disease. Cochrane Database of Systematic Reviews 2003, Issue 3. Art No. CD004372. DOI:10.1002/14651858.CD004372.
46. Kovacs A.H., Silversides C., Saidi A., et al. The role of the psychologist in adult congenital heart disease. Cardiol Clin 2006, 24:607-618.
47. Birks Y., Sloper P., Lewin R., et al. Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2008, 10:16-29.
48. Kovacs A.H., Bendell K.L., Colman J., et al. Adult congenital heart disease: psychosocial needs and treatment preferences. Congenital Heart Dis 2009, 4:139-146.
49. Moons P., Van Deyk K., Marquet K., et al. Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 2005, 26:298-307.
50. Tong E.M., Sparacino P.S., Messias D.K., et al. Growing up with congenital heart disease: the dilemmas of adolescents and young adults. Cardiol Young 1998, 8:303-309.
51. Claessens P., Moons P., de Casterle B.D., et al. What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. Eur J Cardiovasc Nurs 2005, 4:3-10.
52. Kamphuis M., et al. Employment in adults with congenital heart disease. Arch Pediatr Adolesc Med 2002, 156:1143-1148.
53. Crossland D.S., Jackson S.P., Lyall R., et al. Employment and advice regarding careers for adults with congenital heart disease. Cardiol Young 2005, 15:391-395.
54. Immer F.F., Althaus S.M., Berdat P.A., et al. Quality of life and specific problems after cardiac surgery in adolescents and adults with congenital heart diseases. Eur J Cardiovasc Prev Rehabil 2005, 12:138-143.
55. Crossland D.S., Jackson S.P., Lyall R., et al. Life insurance and mortgage application in adults with congenital heart disease. Eur J Cardio-Thorac Surg 2004, 25:931-933.