Hostname: page-component-586b7cd67f-l7hp2 Total loading time: 0 Render date: 2024-11-23T02:45:58.816Z Has data issue: false hasContentIssue false
  • English
  • Français

Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease

Published online by Cambridge University Press:  04 July 2016

Gil Wernovsky ,
Stacey L. Lihn  and
Melissa M. Olen
Gil Wernovsky*
Affiliation:
The Heart Program at Nicklaus Children’s Hospital, Miami Children’s Health System, Miami, Florida, United States of America Herbert Wertheim College of Medicine, Florida International University, Miami, Florida, United States of America
Stacey L. Lihn
Affiliation:
Sisters By Heart, Phoenix, Arizona; National Pediatric Cardiology Quality Improvement Collaborative, United States of America
Melissa M. Olen
Affiliation:
The Heart Program at Nicklaus Children’s Hospital, Miami Children’s Health System, Miami, Florida, United States of America
*
Correspondence to: G. Wernovsky, Nicklaus Children’s Hospital, Miami Children’s Health System, 3100 SW 62nd Street, Miami, FL 33155, United States of America. Tel: +1 786 624 3278; Fax: +1 305 666 3078; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Over the past 20 years, the successes of neonatal and infant surgery have resulted in dramatically changed demographics in ambulatory cardiology. These school-aged children and young adults have complex and, in some cases, previously unexpected cardiac and non-cardiac consequences of their surgical and/or transcatheter procedures. There is a growing need for additional cardiac and non-cardiac subspecialists, and coordination of care may be quite challenging. In contrast to hospital-based care, where inpatient care protocols are common, and perioperative expectations are more or less predictable for most children, ambulatory cardiologists have evolved strategies of care more or less independently, based on their education, training, experience, and individual styles, resulting in highly variable follow-up strategies. We have proposed a combination proactive–reactive collaborative model with a patient’s primary cardiologist, primary-care provider, and subspecialists, along with the patient and their family. The goal is to help standardise data collection in the ambulatory setting, reduce patient and family anxiety, increase health literacy, measure and address the non-cardiac consequences of complex cardiac disease, and aid in the transition to self-care as an adult.

Keywords

Ambulatory cardiologycardiac surgeryguidelinesCHD
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 4 , May 2017 , pp. 648 - 662
Check for updates
Copyright
© Cambridge University Press 2016 

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. Fyler, DC. Report of the New England regional infant cardiac program. American Academy of Pediatrics. Pediatrics 1980; 65 (Pt 2): 375–461.Google Scholar
2. Norozi, K, Wessel, A, Alpers, V, et al. Chronotropic incompetence in adolescents and adults with congenital heart disease after cardiac surgery. J Card Fail 2007; 13: 263–268.Google Scholar
3. Baysa, SJ, Kanter, RJ. Ventricular tachycardia following surgical repair of complex congenital heart disease. Card Electrophysiol Clin 2016; 8: 201–204.Google Scholar
4. Reybrouck, T, Mertens, L. Physical performance and physical activity in grown-up congenital heart disease. Eur J Cardiovasc Prev Rehabil 2005; 12: 498–502.Google Scholar
5. Pinto, NM, Marino, BS, Wernovsky, G, et al. Obesity is a common comorbidity in children with congenital and acquired heart disease. Pediatrics 2007; 120: e1157–e1164.Google Scholar
6. Deen, JF, Krieger, EV, Slee, AE, et al. Metabolic syndrome in adults with congenital heart disease. J Am Heart Assoc 2016; 5: e001132.Google Scholar
7. Rychik, J. The relentless effects of the Fontan paradox. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2016; 19: 37–43.Google Scholar
8. Khairy, P, Van Hare, GF, Balaji, S, et al. PACES/HRS expert consensus statement on the recognition and management of arrhythmias in adult congenital heart disease: developed in partnership between the Pediatric and Congenital Electrophysiology Society (PACES) and the Heart Rhythm Society (HRS). Heart Rhythm 2014; 11: e102–e165.CrossRefGoogle ScholarPubMed
9. Villafañe, J, Lantin-Hermoso, MR, Bhatt, AB, et al. D-transposition of the great arteries: the current era of the arterial switch operation. J Am Coll Cardiol 2014; 64: 498–511.Google Scholar
10. Cohen, MS, Wernovsky, G. Is the arterial switch operation as good over the long term as we thought it would be? Cardiol Young 2006; 16 (Suppl 3): 117–124.CrossRefGoogle Scholar
11. McBride, MG, Kirshbom, PM, Gaynor, JW, et al. Late cardiopulmonary and musculoskeletal exercise performance after repair for total anomalous pulmonary venous connection during infancy. J Thorac Cardiovasc Surg 2007; 133: 1533–1539.CrossRefGoogle ScholarPubMed
12. Downing, TE, Kim, YY. Tetralogy of Fallot: general principles of management. Cardiol Clin 2015; 33: 531–541.Google Scholar
13. Sabate Rotes, A, Johnson, JN, Burkhart, HM, Eidem, BW, Allison, TG, Driscoll, DJ. Cardiorespiratory response to exercise before and after pulmonary valve replacement in patients with repaired tetralogy of Fallot: a retrospective study and systematic review of the literature. Congenit Heart Dis 2015; 10: 263–270.Google Scholar
14. Fiorentino, F, Stickley, J, Dorobantu, D, Pandey, R, et al. Early reoperations in a 5-year national cohort of pediatric patients with congenital heart disease. Ann Thorac Surg 2016; 101: 1522–1529.Google Scholar
15. Buratto, E, Ye, XT, Bullock, A, et al. Long-term outcomes of reoperations following repair of partial atrioventricular septal defect. Eur J Cardiothorac Surg 2016 February 25; pii: ezw018.Google Scholar
16. Ginde, S, Bartz, PJ, Hill, GD, et al. Restrictive lung disease is an independent predictor of exercise intolerance in the adult with congenital heart disease. Congenit Heart Dis 2013; 8: 246–254.Google Scholar
17. Cohen, SB, Ginde, S, Bartz, PJ, Earing, MG. Extracardiac complications in adults with congenital heart disease. Congenit Heart Dis 2013; 8: 370–378.Google Scholar
18. Kovacs, AH, Utens, EM. More than just the heart: transition and psychosocial issues in adult congenital heart disease. Cardiol Clin 2015; 33: 625–634.Google Scholar
19. Neal, AE, Stopp, C, Wypij, D, et al. Predictors of health-related quality of life in adolescents with tetralogy of Fallot. J Pediatr 2015; 166: 132–138.Google Scholar
20. Dulfer, K, Duppen, N, Kuipers, IM, et al. Aerobic exercise influences quality of life of children and youngsters with congenital heart disease: a randomized controlled trial. J Adolesc Health 2014; 55: 65–72.CrossRefGoogle ScholarPubMed
21. Schaefer, C, von Rhein, M, Knirsch, W, et al. Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease. Dev Med Child Neurol 2013; 55: 1143–1149.Google Scholar
22. Mellion, K, Uzark, K, Cassedy, A, et al. Pediatric cardiac quality of life inventory testing study consortium. Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781–788.Google Scholar
23. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl 1): 92–104.CrossRefGoogle Scholar
24. Lata, K, Mishra, D, Mehta, V, Juneja, M. Neurodevelopmental status of children aged 6-30 months with congenital heart disease. Indian Pediatr 2015; 52: 957–960.CrossRefGoogle ScholarPubMed
25. Riehle-Colarusso, T, Autry, A, Razzaghi, H, et al. Congenital heart defects and receipt of special education services. Pediatrics 2015; 136: 496–504.Google Scholar
26. Pereira Kda, R, Firpo, C, Gasparin, M, et al. Evaluation of swallowing in infants with congenital heart defect. Int Arch Otorhinolaryngol 2015; 19: 55–60.Google Scholar
27. Belmont, JW, Craigen, W, Martinez, H, Jefferies, JL. Genetic disorders with both hearing loss and cardiovascular abnormalities. Adv Otorhinolaryngol 2011; 70: 66–74.Google ScholarPubMed
28. Deng, LX, Khan, AM, Drajpuch, D, et al. Prevalence and correlates of post-traumatic stress disorder in adults with congenital heart disease. Am J Cardiol 2016; 117: 853–857.Google Scholar
29. Helfricht, S, Latal, B, Fischer, JE, Tomaske, M, Landolt, MA. Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study. Pediatr Crit Care Med 2008; 9: 217–223.Google Scholar
30. Palfrey, J, Sofis, L, Davidson, E, Liu, J, Freeman, L, Ganz, M. The pediatric alliance for coordinated care: evaluation of a medical home model. Pediatrics 2004; 113: 1507–1516.Google Scholar
31. Institute of Medicine (US). Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy Press, Washington, DC, United States of America 2001, p. 97.Google Scholar
32. Friedman, KG, Rathod, RH, Farias, M, et al. Resource utilization after introduction of a standardized clinical assessment and management plan. Congenit Heart Dis 2010; 5: 374–381.CrossRefGoogle ScholarPubMed
33. Farias, M, Jenkins, K, Lock, J, et al. Standardized clinical assessment and management plans (SCAMPs) provide a better alternative to clinical practice guidelines. Health Aff (Millwood) 2013; 32: 911–920.Google Scholar
34. Porras, D, Brown, DW, Rathod, R, et al. Acute outcomes after introduction of a standardized clinical assessment and management plan (SCAMP) for balloon aortic valvuloplasty in congenital aortic stenosis. Congenit Heart Dis 2014; 9: 316–325.Google Scholar
35. Farias, M, Friedman, KG, Lock, JE, Rathod, RH. Gathering and learning from relevant clinical data: a new framework. Acad Med 2015; 90: 143–148.Google Scholar
36. Farias, M, Friedman, KG, Powell, AJ, et al. Dynamic evolution of practice guidelines: analysis of deviations from assessment and management plans. Pediatrics 2012; 130: 93–98.Google Scholar
37. Farias, M, Ziniel, S, Rathod, RH, et al. Provider attitudes toward standardized clinical assessment and management plans (SCAMPs). Congenit Heart Dis 2011; 6: 558–565.Google Scholar
38. Wernovsky, G, Rome, JJ, Tabbutt, S, et al. Guidelines for the outpatient management of complex congenital heart disease. Congenit Heart Dis 2006; 1: 10–26.CrossRefGoogle ScholarPubMed
39. Cabana, MD, Rand, CS, Powe, NR, et al. Why don’t physicians follow clinical practice guidelines? A framework for improvement. JAMA 1999; 282: 1458–1465.CrossRefGoogle ScholarPubMed
40. Cabana, MD, Kim, C. Physician adherence to preventive cardiology guidelines for women. Womens Health Issues 2003; 13: 142–149.Google Scholar
41. What is health care transition? The National Alliance to Advance Adolescent Health Care. Retrieved June 17, 2016, from http://www.gottransition.org/providers/index.cfm Google Scholar
42. Takken, T, Giardini, A, Reybrouch, T, et al. Recommendations for physical activity, recreation sport, and exercise training in paediatric patients with congenital heart disease: a report from the Exercise, Basic & Translational Research Section of the European Association of Cardiovascular Prevention and Rehabilitation, the European Congenital Heart and Lung Exercise Group, and the Association For European Paediatric Cardiology. Eur J Prev Cardiol 2012; 19: 1034–6542.Google Scholar
43. Chen, CW, Su, WJ, Wang, JK, Yang, HL, Chiang, YT, Moons, P. Physical self-concept and its link to cardiopulmonary exercise tolerance among adolescents with mild congenital heart disease. Eur J Cardiovasc Nurs 2015; 14: 206–213.CrossRefGoogle ScholarPubMed
43. Kavey, RE, Daniels, SR, Lauer, RM, et al. American Heart Association guidelines for primary prevention of atherosclerotic cardiovascular disease beginning in childhood. Circulation 2003; 107: 1562–1566.Google Scholar
44. Hayman, LL, Meininger, JC, Daniels, SR, et al. Primary prevention of cardiovascular disease in nursing practice: focus on children and youth: a scientific statement from the American Heart Association Committee on Atherosclerosis, Hypertension, and Obesity in Youth of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Epidemiology and Prevention, and Council on Nutrition, Physical Activity, and Metabolism. Circulation 2007; 116: 344–357.Google Scholar
46. 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: 1143–1172.Google Scholar
47. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues. Circulation 2011; 123: 1454–1485.CrossRefGoogle ScholarPubMed
48. McCusker, CG, Doherty, NN, Molloy, B, et al. A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child Care Health Dev 2010; 36: 110–117.Google Scholar
49. Jacobs, JP, Maruszewski, B, Tchervenkov, CI, et al. The current status and future directions of efforts to create a global database for the outcomes of therapy for congenital heart disease. Cardiol Young 2005; 15 (Suppl 1): 190–197.Google Scholar
50. Tchervenkov, CI, Jacobs, JP, Bernier, PL, et al. The improvement of care for paediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiol Young 2008; 18 (Suppl 2): 63–69.Google Scholar
51. Jacobs, JP, Jacobs, ML, Mavroudis, C, et al. Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement. Cardiol Young 2008; 18 (Suppl 2): 38–62.Google Scholar
52. Jacobs, JP, Jacobs, ML, Maruszewski, B, et al. Initial application in the EACTS and STS congenital heart surgery databases of an empirically derived methodology of complexity adjustment to evaluate surgical case mix and results. Eur J Cardiothorac Surg 2012; 42: 775–779.Google Scholar
53. Rychik, J, Veldtman, G, Rand, E, et al. The precarious state of the liver after a Fontan operation: summary of a multidisciplinary symposium. Pediatr Cardiol 2012; 33: 1001–1012.Google Scholar
54. Sharma, S, Ruebner, RL, Furth, SL, Dodds, KM, Rychik, J, Goldberg, DJ. Assessment of kidney function in survivors following Fontan palliation. Congenit Heart Dis 2016 April 22; doi: 10.1111/chd.12358 [Epub ahead of print].Google Scholar
55. Rychik, J, Goldberg, D, Rand, E, et al. End-organ consequences of the Fontan operation: liver fibrosis, protein-losing enteropathy and plastic bronchitis. Cardiol Young 2013; 23: 831–840.Google Scholar
56. Morsheimer, MM, Rychik, J, Forbes, L, et al. Risk factors and clinical significance of lymphopenia in survivors of the Fontan procedure for single-ventricle congenital cardiac disease. J Allergy Clin Immunol Pract 2016; 4: 491–496.Google Scholar
57. Avitabile, CM, Goldberg, DJ, Zemel, BS, et al. Deficits in bone density and structure in children and young adults following Fontan palliation. Bone 2015; 77: 12–16.Google Scholar
58. Avitabile, CM, Leonard, MB, Zemel, BS, et al. Lean mass deficits, vitamin D status and exercise capacity in children and young adults after Fontan palliation. Heart 2014; 100: 1702–1707.Google Scholar