Progress in Pediatric Cardiology
Volume 25, Issue 1 , Pages 103-111 , April 2008

Pediatric cardiomyopathy as a chronic disease: A perspective on comprehensive care programs

  • Natalya Bublik
  • ,
  • Jorge A. Alvarez
  • ,
  • Steven E. Lipshultz

      Affiliations

    • Corresponding Author InformationCorresponding author. Department of Pediatrics (D820), University of Miami School of Medicine, P.O. Box 016820, Miami, FL 33101, USA. Tel.: +1 305 243 3993; fax: +1 305 243 3990.
    • Department of Pediatrics, Miller School of Medicine at the University of Miami, Medical Campus-MCCD-D820, 1601 NW 12th Avenue, 9th Floor, Miami, FL 33136, USA.

References 

  1. Lipshultz SE, Sleeper LA, Towbin JA, et al. The incidence of pediatric cardiomyopathy in two regions of the United States. N Engl J Med. Apr 24 2003;348(17):1647–1655
  2. Towbin JA, Lowe AM, Colan SD, et al. Incidence, causes, and outcomes of dilated cardiomyopathy in children. JAMA. Oct 18 2006;296(15):1867–1876
  3. Colan SD, Lipshultz SE, Lowe AM, et al. Epidemiology and cause-specific outcome of hypertrophic cardiomyopathy in children: findings from the Pediatric Cardiomyopathy Registry. Circulation. Feb 13 2007;115(6):773–781
  4. Boucek MM, Faro A, Novick RJ, Bennett LE, Keck BM, Hosenpud JD. The Registry of the International Society for Heart and Lung Transplantation: Fourth Official Pediatric Report–2000. J Heart Lung Transplant. Jan 2001;20(1):39–52
  5. Moller JH, Allen HD, Clark EB, et al. Report of the task force on children and youth. American Heart Association. Circulation. Nov 1993;88(5 Pt 1):2479–2486
  6. Rosamond W, Flegal K, Friday G, et al. Heart disease and stroke statistics–2007 update: a report from the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation. Feb 6 2007;115(5):e69–e171
  7. Healthcare Cost and Utilization Project. http://www.hcup-us.ahrq.gov/overview.jsp. Accessed October 25 2007.
  8. Dayton JD, Kanter KR, Vincent RN, Mahle WT. Cost-effectiveness of pediatric heart transplantation. J Heart Lung Transplant. Apr 2006;25(4):409–415
  9. Silber JH, Gleeson SP, Zhao H. The influence of chronic disease on resource utilization in common acute pediatric conditions. Financial concerns for children's hospitals. Arch Pediatr Adolesc Med. Feb 1999;153(2):169–179
  10. Liptak GS, Burns CM, Davidson PW, McAnarney ER. Effects of providing comprehensive ambulatory services to children with chronic conditions. Arch Pediatr Adolesc Med. Oct 1998;152(10):1003–1008
  11. Beck JK, Logan KJ, Hamm RM, et al. Reimbursement for pediatric diabetes intensive case management: a model for chronic diseases?. Pediatrics. Jan 2004;113(1 Pt 1):e47–e50
  12. Rich MW, Beckham V, Wittenberg C, Leven CL, Freedland KE, Carney RM. A multidisciplinary intervention to prevent the readmission of elderly patients with congestive heart failure. N Engl J Med. Nov 2 1995;333(18):1190–1195
  13. Fonarow GC, Stevenson LW, Walden JA, et al. Impact of a comprehensive heart failure management program on hospital readmission and functional status of patients with advanced heart failure. J Am Coll Cardiol. Sep 1997;30(3):725–732
  14. Fonarow GC, Abraham WT, Albert NM, et al. Influence of a performance-improvement initiative on quality of care for patients hospitalized with heart failure: results of the Organized Program to Initiate Lifesaving Treatment in Hospitalized Patients With Heart Failure (OPTIMIZE-HF). Arch Intern Med. Jul 23 2007;167(14):1493–1502
  15. Anderson C, Deepak BV, Amoateng-Adjepong Y, Zarich S. Benefits of comprehensive inpatient education and discharge planning combined with outpatient support in elderly patients with congestive heart failure. Congest Heart Fail (Greenwich Conn). Nov–Dec 2005;11(6):315–321
  16. Berkowitz R, Blank LJ, Powell SK. Strategies to reduce hospitalization in the management of heart failure. Lippincotts Case Manag. Nov–Dec 2005;10(6 Suppl):S1–S15[quiz S16–17]
  17. Gwadry-Sridhar FH, Flintoft V, Lee DS, Lee H, Guyatt GH. A systematic review and meta-analysis of studies comparing readmission rates and mortality rates in patients with heart failure. Arch Intern Med. Nov 22 2004;164(21):2315–2320
  18. Phend C. ACC: Mixed messages on heart failure disease management.www.medpagetoday.com/Cardiology/2005ACCMeeting/tb/5370. Accessed on November 7, 2007.
  19. American Heart Association. Get with the guidelines. http://www.americanheart.org/presenter.jhtml?identifier=1165. Accessed November 7, 2007.
  20. Children's Cardiomyopathy Foundation. Vision Statement. http://www.childrenscardiomyopathy.org/site/vision.php. Accessed October 19, 2007.
  21. Cystic Fibrosis Foundation. http://www.cff.org/treatments/CareCenterNetwork. Accessed October 19, 2007.
  22. Cox GF, Sleeper LA, Lowe AM, et al. Factors associated with establishing a causal diagnosis for children with cardiomyopathy. Pediatrics. Oct 2006;118(4):1519–1531
  23. K Uzark, MB Benedict, E Daberkow Carson, et al. Guidelines for Parent Support Groups. American Heart Association [http://www.americanheart.org/presenter.jhtml?identifier=1746. Accessed October 22, 2007.
  24. Centers for Disease Control and Prevention. Chronic Disease Overview. http://www.cdc.gov/nccdphp/overview.htm. Accessed August 28, 2007.
  25. Institute of Medicine . Crossing the quality chasm: a new health system for the twenty-first century. Washington: National Academy Press; 2001;
  26. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff. Nov–Dec 2001;20(6):64–78
  27. Alvarez J, Scully R, Miller T, et al. Long-term effects of treatments for childhood cancers. Curr Opin Pediatr. 2007;19(1):23–31
  28. Lipshultz SE, Alvarez JA, Scully RE. Anthracycline-associated cardiotoxicity in survivors of childhood cancer. Heart. In Press.
  29. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. Oct 12 2006;355(15):1572–1582
  30. Skinner R, Wallace WH, Levitt GA. Long-term follow-up of people who have survived cancer during childhood. Lancet Oncol. Jun 2006;7(6):489–498
  31. Bryant J, Picot J, Baxter L, Levitt G, Sullivan I, Clegg A. Clinical and cost-effectiveness of cardioprotection against the toxic effects of anthracyclines given to children with cancer: a systematic review. Br J Cancer. Jan 29 2007;96(2):226–230
  32. Lipshultz SE, Giantris AL, Lipsitz SR, et al. Doxorubicin administration by continuous infusion is not cardioprotective: the Dana-Farber 91-01 acute lymphoblastic leukemia protocol. J Clin Oncol. Mar 15 2002;20(6):1677–1682
  33. Barry E, Alvarez JA, Scully RE, Miller TL, Lipshultz SE. Anthracycline-induced cardiotoxicity: course, pathophysiology, prevention and management. Expert Opin Pharmacother. Jun 2007;8(8):1039–1058
  34. Lipshultz SE, Lipsitz SR, Sallan SE, et al. Chronic progressive cardiac dysfunction years after doxorubicin therapy for childhood acute lymphoblastic leukemia. J Clin Oncol. Apr 20 2005;23((12):2629–2636
  35. Children's Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. http://www.survivorshipguidelines.org. Accessed November 2, 2007.
  36. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. Nov 10 2006;24(32):5117–5124
  37. Oeffinger KC, Wallace WH. Barriers to follow-up care of survivors in the United States and the United Kingdom. Pediatr Blood Cancer. Feb 2006;46(2):135–142
  38. Evans RW. Economic and social costs of heart transplantation. Heart Transplant. May 1982;1(3):243–251
  39. Evans RW. The economics of heart transplantation. Circulation. Jan 1987;75(1):63–76
  40. Evans RW. Socioeconomic aspects of heart transplantation. Curr Opin Cardiol. Mar 1995;10(2):169–179
  41. Sleeper LA, Towbin JA, Colan SD, et al. Impaired functional status in children with cardiomyopathy: a report from the Pediatric Cardiomyopathy Registry. Circulation. 2004;S110:III-385
  42. Parent to Parent–USA. http://www.p2pusa.org/. Accessed October 20, 2007.
  43. Family Voices. Family Voices. http://www.familyvoices.org/. Accessed October 20, 2007.
  44. Miller TL, Neri D, Extein J, Somarriba G, Strickman-Stein N. Nutrition in pediatric cardiomyopathy. Prog Pediatr Cardiol. 2007;24(1):59–71
  45. Somarriba G, Extein J, Miller TL. Exercise rehabilitation in pediatric cardiomyopathy. Prog Pediatr Cardiol. 2007;
  46. Gidding SS. The importance of randomized controlled trials in pediatric cardiology. JAMA. Sep 12 2007;298(10):1214–1216
  47. Shaddy RE, Boucek MM, Hsu DT, et al. Carvedilol for children and adolescents with heart failure: a randomized controlled trial. JAMA. Sep 12 2007;298(10):1171–1179
  48. Schwartz ML, Cox GF, Lin AE, et al. Clinical approach to genetic cardiomyopathy in children. Circulation. October 15, 1996;94(8):2021–2038
  49. Rosenthal D, Chrisant MR, Edens E, et al. International Society for Heart and Lung Transplantation: practice guidelines for management of heart failure in children. J Heart Lung Transplant. Dec 2004;23(12):1313–1333
  50. Lipshultz SE. Realizing optimal care for children with cardiovascular disease: funding challenges and research approaches. Prog Pediatr Cardiol. 2005;20(1):71–90
  51. Lipshultz SE. Ventricular dysfunction clinical research in infants, children and adolescents. Prog Pediatr Cardiol. Nov 4 2000;12(1):1–28

PII: S1058-9813(07)00173-7

doi: 10.1016/j.ppedcard.2007.11.011

Progress in Pediatric Cardiology
Volume 25, Issue 1 , Pages 103-111 , April 2008