Consent

1. Educating Pediatric and Family Medicine residents about Transition to adult subspecialty care for Congenital Heart Disease

2. Consent Within this training module you will review slides and videos about transition of pediatric cardiac patients. If you consent to complete this module you will be required to answer pre- and post-test questions to assess your knowledge. • By checking the YES box you consent to participating in this training module and answering all the pre- and post-test questions Yes No

3. Name: • Gender: • Residency Program: • Type of Residency (Peds / IM or FP): • Year graduated Medical School: • Medical School • E-mail address:

4. The focus of this module is Congenital Heart Disease (CHD) • The principles discussed can be applied to all healthy pediatric patients and those with other chronic conditions or special health care needs.

5. Objectives • By the completion of this module, residents should have a clear understanding of: • The importance of transition of cardiac patients • The importance of life-long cardiac care • How to encourage patient-centered care • How to develop strategies to incorporate transitional care into practice

6. What is transition? • Transition is the purposeful planned process that supports adolescents and young adults with chronic health conditions and allows them to move from a pediatric practice to an adult-oriented health-care practice, providers, and facilities • To be successful, the process attends to the medical, psychosocial, educational and vocational needs

7. Transition ≠ Transfer • Transition is not synonymous with the transfer of medical care • Transition refers to a gradual shift in the responsibility of health care management from the family to the patient • Transfer of care refers to the movement of patient care to adult centered providers

8. 12 minute video • Intro • 0 to 29 seconds

9. Transition • The goal of transition is to “provide uninterrupted health care that is patient-centered, age and developmentally appropriate, flexible, and comprehensive.” • Although this module is focused on CHD, the principles are applicable to all patients with special health care needs

10. Transfer to Adult Medical Care Since age 18 Outcome of 360 Patients Reid et al Pediatrics 2004 113

11. Children with Special Health Care Needs • 50% of adolescents recalled provider who discussed how needs might change in adulthood • 30% had plans for changing health care needs • 21% had plan for transferring to adult care National CSHCN Survey 2000-2001

12. Barriers to Transition

13. Barriers to Transition • There are many obstacles to the process of transition: • Patient • Family • Pediatric cardiology • Adult cardiology • Adult Congenital Heart Disease (ACHD) providers

14. Barriers to Transition: Patients • Transfer experienced as rejection • May remain under parent’s insurance • Overwhelmed by new responsibilities: self-care, medical decision making, self-advocacy • Need to unlearn successful pediatric adaptive strategies and learn new “adult system” behaviors • Confronted with “realities” of morbidity and death • Timing of transfer coincides with other stresses • Regionalization of ACHD care and travel

15. Barriers to Transition:Parents • Ensured children were compliant • Concerned that adolescent is less vigilant • Required to provide informed consent • Parents become attached to pediatric providers • Parents feel alienated • 30% parents resisted children being seen alone but this decreased to 15% following education

16. Barriers to Transition:Pediatric cardiologists • May be reluctant to transition and transfer patients to ACHD care because of close relationship • May lack confidence in adult providers • Requires a shift in professional attitude to begin treating adolescents like young adults • Must unlearn behaviors and promote “closure”

17. Barriers to Transition:Adult Providers • Because of inadequate number of ACHD clinics, difficult to establish ACHD cardiac care • Many internists report inadequate training in the care of adults with childhood onset conditions • Adult care providers may be less prepared to meet ongoing transitional educational needs

18. Barriers to Transition:Insurance • Transition to adult care occurs at the time many young adults lose or change medical insurance • Insurance may be declined or offered at high premiums and may prevent continued care • Insured patients may be referred to a general cardiologist instead of out-of-network ACHD cardiologist

19. Why Transition Congenital Heart Disease Patients?

20. AAP/ AAFP and ACP Guidelines • Transition “to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood”

21. Lapse of Care as Predictor for Morbidity in Adults with CHD • Lapse of medical care > 2 years in 63% patients • Median duration 10 years (2 to 50 years) • 3.1 times more likely to need urgent  intervention Yeung et al IJC125 ( 2008) 62-65

22. Inadequate transition • Inadequate transition leads to: • Poor understanding of health status • Loss of follow up • Delayed care • Potential serious consequences • Late presentation to ER • Emotional stress • Financial stress

23. Why is transition important in CHD? • Young patients with CHD should: • Take greater responsibility for their health care • Become comfortable making medical decisions • Optimize health through consistent medical care • At a minimum, young patients with moderate or great complexity defects must be informed of the need for regular long term cardiac care

24. Goals for Optimizing Transition • Educate about medical condition • Establish comfort in communication • Encourage decision making • Provide uninterrupted health care • Optimize quality of life

25. Video • Make stronger • 30 seconds to 1.02

26. When to Transition Congenital Heart Disease Patients?

27. Betz C, Nurs Clin N Am 2004 681-713

28. AAP Consensus Statement 2002 • Create a written health care transition plan by age 14 with young person and family. This plan should be reviewed and updated annually and before transfer of care.

29. How to Transition Congenital Heart Disease PatientsPatient Considerations

30. Patient Challenges • Overwhelmed by new responsibilities: self-care, medical decision making, self-advocacy • Confronted with “realities” of increasing morbidity • Need to unlearn pediatric adaptive behaviors • Need to learn new “adult system” behaviors • Our goal is to: • increase self-responsibility • provide support

31. Goal: Increase Self-Responsibility • In coordination with general development • Engage the patient • Patients seen alone for part of clinic after 12 yrs • Provide opportunities for control and decisions • Encourage self care • Modify to individual needs • Involve family as desired by patient

32. Goal: Provide Support • Planned and sensitive within constraints • Patients in control within limits • Dealing with self image • Gradual process that begins at 12 years until adulthood and after care is transferred to ACHD team • Family are as involved as the patient wants

33. How to Transition Congenital Heart Disease PatientsProvider Considerations

34. Specific CHD Issues • Education/career plan • Contraception/pregnancy • Genetics • Non cardiac surgery • Lifestyle issues • Communication skills • Self care • Anatomy • Previous surgeries • Hemodynamics • Arrhythmias • Medications • Endocarditis • Anticipated surgeries “Repaired” does not mean fixed

35. How to transition • An ongoing process • 3 - 5 years: encourage discussion about activity level and symptoms • 7-10 years: diagnosis, medication, exercise limitation, SBE discussed directly with patient • Teenagers: heart healthy behaviors, smoking, alcohol , illicit drugs, birth control, pregnancy risks, relevant genetic aspects

36. How to transition • Provide patients with accurate knowledge regarding their cardiac defects and treatment • Promote the concept of self care • Direct patients to transition internet sites • To avoid overlooking important educational topics, an “educational checklist” can be placed in all outpatient charts

37. A helpful mnemonic to remember issues • T Tattoos, piercings and antibiotic prophylaxis • E Education • E   Exercise • N   Need life long care • A  Access to care and insurance • G   General health • E    Employment • R    Relationships • S    Smoking, alcohol and drugs

38. How to transition • Make a habit of speaking to young patients on their own • Review gradually and regularly during teenage years • Encourage patient to communicate their concerns • Encourage teenagers to contact office • Include patients in decision-making

39. How to transition • Develop a written transition plan with patient and family: • Display a public commitment to transition • Establish education as a priority • Consider referring patients to a regional “medical home” • Transfer of care letter with relevant medical and psychosocial information and care plan • Transfer to ACHD clinic

40. Medical Home • AAP: primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective • Partnership between family and primary health care provider • Ideal place to educate patient with chronic health care needs and prepare for transfer to adult care

41. Video Participate 9:48 to 11:00

42. Transition Resources • Formal transition clinic for 14 to 16 year old • Group classes • Regional patient and family conferences • One-on-one nurse education • Generic transition services • Camp and mentorship

43. Transition Visits • Invitation to visit the ACHD clinic • Meet members of the adult team • Tour of the clinic area ± hospital • physical or virtual • Provide resource materials

44. After Transfer • No further appointments in pediatric services • Patient and pediatric provider contact • should be discouraged • only if agreed to by ACHD clinic • Communication between medical or nursing teams

45. Conclusion • Transition highlighted by AAP, ACP and AAFP • Transition is a purposeful and planned process that begins in early adolescence • Effective transition programs must address the needs of patients, family members, and health care providers • Improving transition process may reduce the number of patients lost to follow-up

46. Conclusion • Although this module is focused on CHD, the principles are applicable to all patients with special health care needs

47. Question 11 • According to the American Academy of Pediatrics, at what age should you have a written transition plan with patient and family? A. 10 years B. 12 years C. 14 years D. 16 years E. 18 years

48. Question 12 • A medical care home is a: A. Foster home for teenagers requiring medical supervision B. Partnership between family and primary health care provider C. Home health care for chronically ill patients D. Patient-centered access to care

49. Question 13 • Are the following statements true or false? A. Transition of care is the same as transfer of care B. You should always see 10 year old patients alone without their parents C. If you see adult patients you do not need to provide education about transition D. Transition refers to a shift in responsibility of health care management from the family to the patient E. The insurance companies are the main barrier to transition

50. Question 14 A 15-year-old boy comes to your office for a sports physical examination. Compared with when you saw him at his 10-year-old health supervision visit, he has progressed from Sexual Maturity Rating 1 to 4. Of the following, the laboratory value that is MOST likely to have changed is: A. Calcium B. Hemoglobin  C. Platelet count D. Serum albumin E. White blood cell count