1. EASING THE TRANSITION FROM PEDIATRIC TO ADULT DIALYSIS
Sandra L. Watkins, MD
University of Washington
Seattle Childrens Hospital
Seattle, Washington

2. U Wisconsin
Children’s Hospital

3. “…Youth have bad manners, contempt for authority, they show disrespect for their elders, love chatter in the place of exercise…they contradict their parents,...gobble up their food and tyrannize their teachers…”

4. “…Youth have bad manners, contempt for authority, they show disrespect for their elders, love chatter in the place of exercise…they contradict their parents,...gobble up their food and tyrannize their teachers…”
Sophocles, 5th Century BC

5. Scope of the Problem Incidence and prevalence Survival
Impact on transition/internal medicine programs

6. Scope of the Problem Incidence and prevalence Survival
Impact on transition/internal medicine programs

7. Incidence and Prevalence of ESRD in Adolescents 10-19 in USA
Year
Prevalence
Incidence
1984
1299
583
1994
2710
599
2002
2819
561
USRDS 2006

8. Scope of the Problem Incidence and prevalence Survival
Impact on transition/internal medicine programs

9. 10-year Survival of Adolescent-onset ESRD by Incident Cohort (USRDS)
Ferris et al Peds Neph 21:1020, 2006

10. Life Expectancy Additional Life Expectancy (years) Males Females
Age (years)
USRDS, 2005

11. Survival of Adolescent-onset ESRD
In 2002, 78% of U.S. patients starting ESRD therapy in adolescence were still alive
At that time, 46% of adolescents were in their twenties, 30% were in their thirties, and 5% survived to be 40 years or older.
This compares favorably to adult-onset ESRD, but is well below that expected for the general US adolescent population.
The CDC reports a national mortality rate for adolescents ages 15 to 19 of 0.067%, the 2.2% annual rate in our adolescent cohort is 30 times greater
Ferris et al Peds Neph 21:1020, 2006

12. Scope of the Problem Incidence and prevalence Survival
Impact on transition/internal medicine programs

13. Transition
Better survival means more patients who require health maintenance and surveillance for secondary disabilities
Transition to adulthood will be realized in approximately 75% of adolescents with onset of ESRD in the USA
One goal of a transition program should be to improve survival in these young adults

14. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

15. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

16. Etiology of All ESRD Incident Counts n=100,359
Diabetes 44,514
Hypertension (HBP) 27,277
Glomerulonephritis 8,243
Cystic kidney 2,231
Other urologic 1,695
Other 11,709
Unknown 4,122
Missing disease*
*Excluded 0.6% for missing diagnosis
USRDS 2002

17. Etiology of Pediatric ESRD 1987-2002 Ages 0-21: n=11,296
Glomerulonephritis
Congenital anomalies 3230
Hereditary diseases
Hemolytic uremic (HUS)
Interstitial nephritis/pyelo 229
Renal infarct/necrosis
Wilms tumor
Diabetes
Other
Unknown
NAPRTCS

18. Initial ESRD Modality Choice Different for Children
Incident ESRD 2003
Ages 0-19 yrs
n=1337 (USRDS)
Incident ESRD 2003
Ages 0-14 yrs
n=700 (USRDS)

19. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

20. Legacy of Cognitive Challenges IQ in Adult Survivors of Childhood ESRD
p<0.0001
Groothoff Arch Dis Ch 87:380, 2002

21. Educational Attainment after Pediatric ESRD
School Level CKD Population
Low * % 27.2%
Intermediate* 31.7% 47.0%
High * % 25.9%
*P = 0.001
Groothoff, 2002

22. Kidney Graft Survival by Education Level, among African-Americans
UNOS Data
Adjusted for age, gender, HLA mismatch, insurance, diagnosis, cold ischemia time, and donor type.
Shoham, Gipson, et al, 2004

23. Unemployment and ESRD %
(Groothoff: Transpl 78:453, 2004; USRDS)

24. Independent Living Dutch Transplant Cohort (n=106)
Healthy Controls Transplant
12.7%
29.4%
Groothoff 2004

25. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

26. Health Coverage
Change from family health insurance to individual insurance coverage
Family health insurance policies typically expire at the age of 19 years or end of full time student status
Abrupt loss of health insurance and the high cost of medications may promote non-adherence

27. Health Coverage
Medicaid health coverage may be an option, depending on disability and family income level. But part-time work may preclude eligibility
For a transplant recipient, Medicare coverage is available for only 36 months after transplantation
High unemployment rate – no access to private insurance

28. Effects of Loss of Insurance
USRDS
1001 pediatric transplant recipients
51.6% lost medicare coverage with functioning graft
Multivariate analysis of graft failure
Medicare loss HR 2.34
Highest graft loss in year following loss of Medicare at 6.5% cf 3.7% with cont Medicare
Risk of death HR 9 cf cont functioning graft
Schnitzler: AJ Transpl 5:563, 2005

29. Effects of Loss of Insurance
USRDS transplant
Assumptions from Woodward analysis of extending Medicare coverage from 1-3 years post-transplant
Graft survival at 20 years improves from 38% to 48%
Annual Medicare savings of $136 million
Schnitzler: AJ Transpl 4:1703, 2004

30. Thousands US Dollars/Yr
Insurance Coverage
Percent Uninsured %
Household Income
Thousands US Dollars/Yr
Age
US Census Bureau, 2004

31. Lack of Health Insurance in Adolescents and Young Adults with CKD
Full extent of problem unknown
Graft loss in transplant recipients
Lack of access to medications and health care in pre-ESRD

32. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

33. ADHERENCE Non-compliance Rates
Non-compliance greater in adolescent renal transplant recipients than in younger children or adults
Non-compliance Rates
Author
Children
Adolescents
Adults
Dobbels 2005
32%
Ettenger 1991
17%
64%
Desmyttere 2005
15-25%

34. Barriers and Special Concerns in Adolescent Transition
Differences in diagnoses and modalities
Educational and Social Challenges
Insurance
Adherence
Differences in medical care styles

35. PEDIATRIC VS INTERNAL MEDICINE APPROACH
Consultation dynamics
Communication modes
Decision-making process
Role of parents and family
McDonagh & Kelly, PCNA 50:1561, 2003

36. PEDIATRIC VS INTERNAL MEDICINE APPROACH
ISSUE
PEDIATRIC
INTERNAL MEDICINE
Age-related
Growth & development, future focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative
Reactive
Shared decision-making
With parent
With patient
Management
Prescriptive
Non-adherence
> Assistance
< Tolerance
Procedural Pain
Lower threshold
of active input
Higher threshold
for active input
Tolerance of immaturity
Higher
Lower
Coordination with federal systems
Greater interface with education
Greater interface with employment
Care provision
Interdisciplinary
Multidisciplinary
# of patients
Fewer
Greater
White, adapted from Rosen

37. PEDIATRIC APPROACH Maternalistic/Paternalistic Frequent labs
Frequent f/u
Track them down
Excessive patience
Pleading
Lengthy visits

38. Case Study 22 yo M, sp LRD TX for PUV
TX 2000, 2 biopsies under general anesthesia, no rejection
2002 transitioned to adult care
Working full time as greens keeper
Cr started to rise, refused biopsy and LTF for 6 mo
Returned for biopsy
Cried as biopsy not to be done under general anesthesia
Severe rejection and eventual graft loss

39. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

40. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

41. Goal of a Transition Program
“The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.”
Ansell BM & Chamberlain MA. Clinical Rheum. 12:363, 1998

42. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

43. IOM QUALITY MEASURES SOURCE: Crossing the Quality Chasm 2001
The Health care system should be:
Safe
Effective
Patient centered
Timely
Efficient
Equitable
SOURCE: Crossing the Quality Chasm 2001

44. Consensus Statement: Health Care Transition
Calls on physicians to:
1. Understand the rationale for
transition from child-oriented
health care
2. Have the knowledge and skills to
facilitate that process
3. Know if, how, and when transfer of
care is indicated
ACP/ ASIM/ AAFP/ AAP
Pediatrics 2002:110 (suppl)

45. Consensus Statement: Health Care Transition
4. Maintain an up-to-date portable medical summary
5. Create a written health care transition plan by age 14: what services, who provides, how financed

46. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

47. Barriers to Self Management

48. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

49. MAIN TASKS OF ADOLESCENCE
Consolidate one’s identity
Establish relationship outside the family
Achieve independence from parents
Find a vocation
McDonagh & Kelly, PCNA 50:1561, 2003

50. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

51. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities
Self-perception as not handicapped
Involvement with household chores
Having a network of friends
Having non-disabled & disabled friends
Family and peer support
Parental support without over protectiveness
Weiner, 1992

52. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities
Self-perception as not handicapped
Involvement with household chores
Having a network of friends
Having non-disabled & disabled friends
Family and peer support
Parental support without over protectiveness
Weiner, 1992

53. Preparation for Transition
The National Survey of CYSHCN, revealed that only 6.3% of YSHCN ages perceived they had received preparation for transition to adulthood.
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

54. Pediatric Team
Begin preparation for transition as early as age 8, certainly age 12
Assess readiness for transition
Chronological age
Maturity and functional age
Current medical status
Adherence
Independence in health care
Self-advocacy skills
Availability of appropriate internist specialist
Encourage child to know and be able to explain medical history, current problems, medications and regimens
Involve child in medical decision-making
Prepare and update portable medical record
Create transition plan

55. Transition Team Joint clinic visits Joint care planning
Shared records of visits and hospitalizations

56. Internal Medicine Team
Recognition of cognitive, education and social limitations
Continue process of helping young adult to manage his/her own medical care
Ongoing counseling re sources of health insurance

57. Society Facilitate methods to pay for collaborative care
Solve the problem of the uninsured
Extend Medicare coverage for transplant immunosuppressive drugs

58. Goal Societal Mandates Barriers Needs Keys to success
TRANSITION PROGRAMS
Goal
Societal Mandates
Barriers
Needs
Keys to success

59. Transition
Transition to adulthood with renal failure is a process that culminates with the transfer to internal medicine care
Efforts to successfully prepare these adolescents involve an interdisciplinary approach and involvement of the patient, family and community.

60. Successful Transition Programs
Orientation that is future focused and flexible
Road map for transition
Begin the transition process early
Clearly identify members of the team
Ongoing training of team members
Transition
Unique medical conditions and needs
Collaboration between pediatric and internist programs

61. Successful Transition Programs
Knowledge of relevant social agencies
Written transition plan
Portable medical record creation
Patient education program and materials
Assess readiness for transition and transfer
Flexible policy on timing
“Graduate” the patients

62. Resources
Healthy and Ready to Work national Resource Center
Catalyst Center for Improving Financing of Care for CYSHCN
State of Washington Adolescent Health Transition Project

63. References
AAP, AAFP, ACP, ASIM. A consensus statement on health care transition sfor young adults with special heath care needs. Pedatrics 110(6) (suppl), 2002.
Boyle MP et al. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmon 32:428-36, 2001.
Cappelli M et al. Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Child Health Care 18: , 1989.
Dobbels F et al. Growing pains: Non-adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatr Transpl 9: , 2005.
Ferris ME et al. Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the USA. Pediatr Nephrol 21: , 2006.
Groothoff JW. Long-term outcomes of children with end-stage renal disease. Pediatr Nephrol 20: , 2005.
Groothoff JW et al. Long-term follow-up of renal transplantation in children: A Dutch cohort study. Transpl 15: , 2004.

64. References
Groothoff et al. Impaired cognition and schooling in adults with end stage renal disease since childhood. Arch Dis Child 87: , 2002.
Grrothoff JW et al. Social Consequences in adult life of end-stage renal disease in childhood. J Pediatr 146: , 2005.
McDonagh J, Kelly DA. Transitioning care of the pediatric recipient to adult caregivers. PCNA 50: , 2003.
Schidlow DV, Fiel SB. Life beyond pediatrics – Transition of chronically ill adolescents from pediatric to adult health care systems. MCNA 74, 1990.
Willoughby LM et al. Health insurance consideratioins for adolescent transplant recipients as they trasition to adulthood. Pediatr Transpl 11: , 2007.
Yen EF et al. Cost-effectiveness of extending medicare coverage of immunosuppressive medications to the life of a kidney transplant. AJ Transpl 4: , 2004.

65. “…I would there were no age between ten and three and twenty, or that youth would sleep out the rest; for there is nothing in between but getting wenches with child, wronging the ancientry, stealing, fighting…”

66. “…I would there were no age between ten and three and twenty, or that youth would sleep out the rest; for there is nothing in between but getting wenches with child, wronging the ancientry, stealing, fighting…”
Shakespeare

67. THANKS Richard Antonelli, MD Craig Becker, MSW Eileen Brewer, MD
Ruth McDonald, MD
Maria Ferris, MD
Debbie Gipson, MD
Patience White, MD

68. U Wisconsin
Children’s Hospital