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SSA Hearing on Compassionate Allowances

SSA Hearing on Compassionate Allowances. Janet N Scheel MD November 9,2010. Cardiomyopathy. Restrictive cardiomyopathy Hypertrophic cardiomyopathy Dilated cardiomyopathy*. Frank Starling Curve. Causes of DCM in Children. Genetic Infectious Metabolic Arrhythmias.

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SSA Hearing on Compassionate Allowances

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  1. SSA Hearing on Compassionate Allowances Janet N Scheel MD November 9,2010

  2. Cardiomyopathy • Restrictive cardiomyopathy • Hypertrophic cardiomyopathy • Dilatedcardiomyopathy*

  3. Frank Starling Curve

  4. Causes of DCM in Children • Genetic • Infectious • Metabolic • Arrhythmias

  5. Causes of DCM in Children • Inflammatory • Nutritional • Structural heart disease • Chemotherapy

  6. CHF symptoms in Adults

  7. CHF Symptoms in ChildrenRoss Classification • Class I- no symptoms • Class II-Mild tachypnea or diaphoresis with feedings/exertion. No growth failure • Class III-Marked tachypnea or diaphoresis with feedings/exertion;prolonged feeding time;growth failure • Class IV-Symptomatic at rest

  8. Treatment options • Oral medical therapy • IV inotropes • Pacing • ECMO/VAD • Transplant

  9. ECMO

  10. ECMO

  11. Long – term devices specific for children

  12. Selection for Pediatric Heart Transplant • End stage congenital heart disease not amenable to surgical or medical therapy • Ross Classification III-IV • Failure to thrive • Protein losing enteropathy • Intractable arrhythmias • Plastic bronchitis

  13. Selection for Pediatric Heart Transplant • Dilated Cardiomyopathy –symptomatic on maximal medical therapy • Restrictive Cardiomyopathy

  14. Exclusion Criteria • Genetic syndrome with poor long term prognosis • Neurologic abnormalities with poor long term prognosis • Irreversible end-organ damage • Socio-economic factors leading to poor long term compliance

  15. Exclusion Criteria • Genetic syndrome with poor long term prognosis • Neurologic abnormalities with poor long term prognosis • Irreversible end-organ damage • Socio-economic factors leading to poor long term compliance

  16. Exclusion Criteria • Pulmonary Hypertension (>5-6 woods units) • Unresponsive to oxygen or pulmonary vasodilators • Transpulmonary gradient > 15mmHg • Pulmonary vein stenosis • Active infection • Active malignancy

  17. AGE DISTRIBUTION OF PEDIATRIC HEART RECIPIENTSBy Year of Transplant NOTE: This figure includes only the heart transplants that are reported to the ISHLT Transplant Registry. As such, this should not be construed as evidence that the number of hearts transplanted worldwide has increased and/or decreased in recent years. ISHLT 2009

  18. PEDIATRIC HEART TRANSPLANTATIONKaplan-Meier Survival(Transplants: 1/1982-6/2007) ISHLT 2009

  19. PEDIATRIC HEART TRANSPLANTATIONConditional Kaplan-Meier Survival (Transplants: 1/1982-6/2007) ISHLT 2009

  20. PEDIATRIC HEART TRANSPLANTATIONConditional Kaplan-Meier Survival for Recent Era (Transplants: 1/1999-6/2007) ISHLT 2009

  21. PEDIATRIC HEART TRANSPLANTS (1/1995-6/2007)Risk Factors For 1 Year Mortality N=3,756 ISHLT 2009 Reference diagnosis = cardiomyopathy

  22. PEDIATRIC HEART RECIPIENTSFunctional Status of Surviving Recipients(Follow-ups: April 1994 - June 2008) ISHLT 2009

  23. PEDIATRIC HEART RECIPIENTSFunctional Status of Surviving Recipients(Follow-ups: April 1994 - June 2008)For the Same Patients ISHLT 2009

  24. PEDIATRIC HEART RECIPIENTS Rehospitalization Post-transplant of Surviving Recipients(Follow-ups: April 1994 - June 2008) ISHLT 2009

  25. PEDIATRIC HEART RECIPIENTSMaintenance Immunosuppression at Time of Follow-up for Same Patients at Each Time Point(Follow-ups: January 2001 - June 2008) % of Patients ISHLT 2009 Analysis is limited to patients who were alive at the time of the follow-up

  26. FREEDOM FROM CORONARY ARTERY VASCULOPATHYFor Pediatric Heart Recipients (Follow-ups: April 1994 - June 2008) ISHLT 2009

  27. GRAFT SURVIVAL FOLLOWING REPORT OF CORONARY ARTERY VASCULOPATHY For Pediatric Heart Recipients(Follow-ups: April 1994 - June 2008)Stratified by Age Group ISHLT 2009

  28. FREEDOM FROM SEVERE RENAL DYSFUNCTION*For Pediatric Heart Recipients(Follow-ups: April 1994 - June 2008) ISHLT 2009

  29. MALIGNANCY POST-HEART TRANSPLANTATION FOR PEDIATRICSCumulative Prevalence in Survivors (Follow-ups: April 1994 - June 2008) NOTE: Multiple types may be reported; sum of types may be greater than total number with malignancy. ISHLT 2009

  30. FREEDOM FROM MALIGNANCYFor Pediatric Heart Recipients(Follow-ups: April 1994 - June 2008) ISHLT 2009

  31. PEDIATRIC HEART RECIPIENTSIncidence of Hypertension between 1 and 3 Years(Transplants: April 1993 - June 2005) ISHLT 2009

  32. PEDIATRIC HEART RECIPIENTSIncidence of Hypertension between 3 and 8 Years(Transplants: April 1993 - June 2000) ISHLT 2009

  33. PEDIATRIC HEART TRANSPLANT RECIPIENTS:Cause of Death (Deaths: January 1992 - June 2008) ISHLT 2009

  34. PEDIATRIC HEART TRANSPLANT RECIPIENTS:Cause of Death (Deaths: January 1998 - June 2008) ISHLT 2009

  35. PEDIATRIC HEART TRANSPLANT RECIPIENTS:Relative Incidence of Leading Causes of Death(Deaths: January 1998 - June 2008) ISHLT 2009

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