Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-10T05:17:12.040Z Has data issue: false hasContentIssue false

Landmark lecture in nursing: a life-cycle perspective on CHD: What happens beyond your clinic?*

Published online by Cambridge University Press:  29 December 2017

Philip Moons*
Affiliation:
KU Leuven Department of Public Health and Primary Care, KU Leuven – University of Leuven, Leuven, Belgium Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden Centre for Person-Centered Care (GPCC), University of Gothenburg, Gothenburg, Sweden
*
Correspondence to: P. Moons, KU Leuven Department of Public Health and Primary Care, KU Leuven – University of Leuven, Kapucijnenvoer 35, Box 7001, B-3000 Leuven, Belgium. Tel: +32 16 37 33 15; Fax: +32 16 33 69 70; E-mail: philip.moons@kuleuven.be

Abstract

Over the past decades, survival of patients with CHD improved significantly, making it a life-cycle disease. Hence, there is a need for a workforce that can take up the care for afflicted individuals in the different phases of the life spectrum. Each life phase is associated with specific challenges. Topics that should receive more attention in clinical care or in CHD research are parenting styles of parents of children, transfer and transition of adolescents, cumulative burden of injury in the brain in adults, and geriatric care for older persons with CHD. Nurses, along with other healthcare professionals, will play a pivotal role in building up expertise in these areas and taking up these challenges.

Type
Original Articles
Copyright
© Cambridge University Press 2017 

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.)

Footnotes

*

Presented at the 2017 Seventh World Congress of Pediatric Cardiology & Cardiac Surgery (WCPCCS 2017), Barcelona, Spain, 16–21 July, 2017. Presented Friday, 21 July, 2017.

References

1. Moons, P, Bovijn, L, Budts, W, Belmans, A, Gewillig, M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010; 122: 22642272.CrossRefGoogle ScholarPubMed
2. Mandalenakis, Z, Rosengren, A, Skoglund, K, Lappas, G, Eriksson, P, Dellborg, M. Survivorship in children and young adults with congenital heart disease in Sweden. JAMA. Intern Med 2017; 177: 224230.Google Scholar
3. Moons, P, Meijboom, FJ, Baumgartner, H, et al. Structure and activities of adult congenital heart disease programmes in Europe. Eur Heart J 2010; 31: 13051310.CrossRefGoogle ScholarPubMed
4. Sadowski, SL. Congenital cardiac disease in the newborn infant: past, present, and future. Crit Care Nurs Clin North Am 2009; 21: 3748, vi.CrossRefGoogle ScholarPubMed
5. Okuhara, CA, Faire, PM, Pike, NA. Acute care pediatric nurse practitioner: a vital role in pediatric cardiothoracic surgery. J Pediatr Nurs 2011; 26: 137142.CrossRefGoogle ScholarPubMed
6. Moons, P, De Geest, S, Budts, W. Comprehensive care for adults with congenital heart disease: expanding roles for nurses. Eur J Cardiovasc Nurs 2002; 1: 2328.CrossRefGoogle ScholarPubMed
7. Sillman, C, Morin, J, Thomet, C, et al. Adult congenital heart disease nurse coordination: essential skills and role in optimizing team-based care a position statement from the International Society for Adult Congenital Heart Disease (ISACHD). Int J Cardiol 2017; 229: 125131.CrossRefGoogle Scholar
8. Moons, P, Scholte op Reimer, W, De Geest, S, et al. Nurse specialists in adult congenital heart disease: the current status in Europe. Eur J Cardiovasc Nurs 2006; 5: 6067.CrossRefGoogle ScholarPubMed
9. Bratt, EL, Jarvholm, S, Ekman-Joelsson, BM, Mattson, LA, Mellander, M. Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease – a qualitative study in a Swedish context. BMC Pregnancy Childbirth 2015; 15: 171.CrossRefGoogle Scholar
10. Lee, CK. Prenatal counseling of fetal congenital heart disease. Curr Treat Options Cardiovasc Med 2017; 19: 5.CrossRefGoogle ScholarPubMed
11. Kolaitis, GA, Meentken, MG, Utens, EMWJ. Mental health problems in parents of children with congenital heart disease. Front Pediatr 2017; 5: 102.CrossRefGoogle ScholarPubMed
12. Woolf-King, SE, Anger, A, Arnold, EA, Weiss, SJ, Teitel, D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6: e004862.CrossRefGoogle ScholarPubMed
13. Luyckx, K, Goossens, E, Missotten, L, Moons, P. Adolescents with congenital heart disease: the importance of perceived parenting for psychosocial and health outcomes. J Dev Behav Pediatr 2011; 32: 651659.CrossRefGoogle ScholarPubMed
14. Rassart, J, Luyckx, K, Goossens, E, Apers, S, Moons, P. A closer look at the developmental interplay between parenting and perceived health in adolescents with congenital heart disease. J Behav Med 2014; 37: 12021214.CrossRefGoogle Scholar
15. Ong, L, Nolan, RP, Irvine, J, Kovacs, AH. Parental overprotection and heart-focused anxiety in adults with congenital heart disease. Int J Behav Med 2011; 18: 260267.CrossRefGoogle ScholarPubMed
16. Warnes, CA, Williams, RG, Bashore, TM, et al. ACC/AHA 2008 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 (writing committee to develop guidelines on the management of adults with congenital heart disease). Circulation 2008; 118: e714e833.Google Scholar
17. Baumgartner, H, Bonhoeffer, P, De Groot, NM, et al. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J 2010; 31: 29152957.Google ScholarPubMed
18. Silversides, CK, Marelli, A, Beauchesne, L, et al. Canadian Cardiovascular Society 2009 Consensus Conference on the management of adults with congenital heart disease: executive summary. Can J Cardiol 2010; 26: 143150.CrossRefGoogle Scholar
19. Baumgartner, H, Budts, W, Chessa, M, et al. Recommendations for organization of care for adults with congenital heart disease and for training in the subspecialty of “grown-up congenital heart disease” in Europe: a position paper of the Working Group on Grown-up Congenital Heart Disease of the European Society of Cardiology. Eur Heart J 2014; 35: 686690.CrossRefGoogle Scholar
20. Knauth, A, Verstappen, A, Reiss, J, Webb, GD. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 2006; 24: 619629.CrossRefGoogle Scholar
21. 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: 259263.CrossRefGoogle ScholarPubMed
22. Goossens, E, Stephani, I, Hilderson, D, et al. Transfer of adolescents with congenital heart disease from pediatric cardiology to adult health care: an analysis of transfer destinations. J Am Coll Cardiol 2011; 57: 23682374.CrossRefGoogle ScholarPubMed
23. Iversen, K, Vejlstrup, NG, Sondergaard, L, Nielsen, OW. Screening of adults with congenital cardiac disease lost for follow-up. Cardiol Young 2007; 17: 601608.CrossRefGoogle ScholarPubMed
24. Yeung, E, Kay, J, Roosevelt, GE, Brandon, M, Yetman, AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 6265.CrossRefGoogle Scholar
25. Vis, JC, van der Velde, ET, Schuuring, MJ, et al. Wanted! 8000 heart patients: identification of adult patients with a congenital heart defect lost to follow-up. Int J Cardiol 2011; 149: 246247.CrossRefGoogle ScholarPubMed
26. Goossens, E, Bovijn, L, Gewillig, M, Budts, W, Moons, P. Predictors of care gaps in adolescents with complex chronic condition transitioning to adulthood. Pediatrics 2016; 137: e20152413.CrossRefGoogle ScholarPubMed
27. Meleis, AI. Transitions Theory: Middle-Range and Situation-Specific Theories in Nursing Research and Practice. Springer Publishing Company, New York, 2010.Google Scholar
28. Schumacher, KL, Meleis, AI. Transitions: a central concept in nursing. Image J Nurs Sch 1994; 26: 119127.CrossRefGoogle ScholarPubMed
29. Blum, RW, Garell, D, Hodgman, CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 14: 570576.CrossRefGoogle ScholarPubMed
30. Campbell, F, Biggs, K, Aldiss, SK, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 2016; 4: CD009794.Google ScholarPubMed
31. Mackie, AS, Rempel, GR, Kovacs, AH, et al. A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study. BMC Cardiovasc Disord 2016; 16: 127.CrossRefGoogle Scholar
32. 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: 18031807.CrossRefGoogle ScholarPubMed
33. Janssens, A, Goossens, E, Luyckx, K, et al. Exploring the relationship between disease-related knowledge and health risk behaviours in young people with congenital heart disease. Eur J Cardiovasc Nurs 2016; 15: 231240.CrossRefGoogle ScholarPubMed
34. Acuna Mora, M, Sparud-Lundin, C, Bratt, EL, Moons, P. Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open 2017; 7: e014593.CrossRefGoogle ScholarPubMed
35. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 11431172.CrossRefGoogle ScholarPubMed
36. Marelli, A, Miller, SP, Marino, BS, Jefferson, AL, Newburger, JW. Brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation 2016; 133: 19511962.CrossRefGoogle ScholarPubMed
37. Limperopoulos, C, Tworetzky, W, McElhinney, DB, et al. Brain volume and metabolism in fetuses with congenital heart disease: evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation 2010; 121: 2633.CrossRefGoogle ScholarPubMed
38. Chen, J, Zimmerman, RA, Jarvik, GP, et al. Perioperative stroke in infants undergoing open heart operations for congenital heart disease. Ann Thorac Surg 2009; 88: 823829.CrossRefGoogle ScholarPubMed
39. Mahle, WT, Tavani, F, Zimmerman, RA, et al. An MRI study of neurological injury before and after congenital heart surgery. Circulation 2002; 106: I109I114.CrossRefGoogle ScholarPubMed
40. Riehle-Colarusso, T, Autry, A, Razzaghi, H, et al. Congenital heart defects and receipt of special education services. Pediatrics 2015; 136: 496504.CrossRefGoogle ScholarPubMed
41. Afilalo, J, Therrien, J, Pilote, L, Ionescu-Ittu, R, Martucci, G, Marelli, AJ. Geriatric congenital heart disease burden of disease and predictors of mortality. J Am Coll Cardiol 2011; 58: 15091515.CrossRefGoogle ScholarPubMed
42. Khairy, P, Ionescu-Ittu, R, Mackie, AS, Abrahamowicz, M, Pilote, L, Marelli, AJ. Changing mortality in congenital heart disease. J Am Coll Cardiol 2010; 56: 11491157.CrossRefGoogle ScholarPubMed
43. van der Bom, T, Mulder, BJ, Meijboom, FJ, et al. Contemporary survival of adults with congenital heart disease. Heart 2015; 101: 19891995.CrossRefGoogle ScholarPubMed
44. Baumgartner, H. Geriatric congenital heart disease: a new challenge in the care of adults with congenital heart disease? Eur Heart J 2014; 35: 683685.CrossRefGoogle ScholarPubMed
45. Tutarel, O, Kempny, A, Alonso-Gonzalez, R, et al. Congenital heart disease beyond the age of 60: emergence of a new population with high resource utilization, high morbidity, and high mortality. Eur Heart J 2014; 35: 725732.CrossRefGoogle ScholarPubMed
46. Bhatt, AB, Foster, E, Kuehl, K, et al. Congenital heart disease in the older adult: a scientific statement from the American Heart Association. Circulation 2015; 131: 18841931.CrossRefGoogle ScholarPubMed