Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine

1. Julie A.Venci, MDInstructorDepartments of Medicine and PediatricsUniversity of Colorado, School of Medicine Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine

2. 8:30 AM: 24 y/o female - Establish Care 8:20am: 24 year-old female – Establish Care

3. 24 y/o female- Establish Care

4. 24 y/o female- Establish Care • CP, non-verbal, mom gives • history, poor historian • Born at 28 weeks, 6 months in • NICU • Has a G-Tube, tracheostomy • Hospitalized 4 times in the last • year- aspiration pna, sz • Last saw pediatrician 3 years • ago. • 8 medications– needs refills; • all liquid suspensions. • No medical records • Exam- in wheelchair

5. Objectives • Define transition and the patient centered medical home • Review how improved survival rates in childhood illnesses have changed how we practice medicine • Understand the challenges of transition from multiple perspectives • Present key elements to implementing a transition plan

6. Transition Definition “The purposeful, planned and timely transition from child and family-centered pediatric health care to patient-centered adult-oriented health care.” Society for Adolescent Medicine, 1993

7. Patient Centered Medical Home TRANSITION

8. Patient Centered Medical Home • Goals: • Better quality • Lower costs • Improved care experience

10. Children and Youth with Special Health Care Needs (CYSHCN) “Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health related services of a type or amount beyond that required by children generally.” Department of Health and Human Services, Health Resources and Services Administration Maternal and Child Bureau

11. Children and Youth with Special Health Care Needs (CYSHCN) • Asthma • ADHD • Diabetes mellitus • Sickle cell disease • Cerebral Palsy • Cystic fibrosis • Chronic kidney disease • Inflammatory bowel disease • Congenital heart disease • Childhood cancer survivors • Solid-organ transplant recipients • Spina bifida • Down syndrome • HIV-AIDS • Genetic and neuromuscular disorders

12. Why Transition is Important • Failure to recognize and plan transition may result in patients dropping out of care • Poor transition processes are recognized to have a significant negative effect on morbidity and mortality in young adults with chronic health needs

14. No Longer Just a Childhood Illness • ~ 11.2 million children ( 15% of all US children) 0-17 years have special health care needs • 500,000 CYSHCN turn 18 and enter adulthood in the US yearly • Survival rates have increased for children with chronic illnesses • >90% survive beyond their 20th birthday

16. Cystic Fibrosis Survival

17. Consensus Statement on Health Care Transition for Young Adults With Special Health Care Needs • Goal of Transition: • 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 American Academy of Pediatrics American Academy of Family Physicians American College of Physicians American Society of Internal Medicine

18. Healthy People 2020 • U.S. Dept. of HHS • 10-yr national goals to improve American health • Increase % of children (including CYSHCN): • Receive care in family-centered, comprehensive, coordinated systems • Have discussed transition with health care provider • Have access to a medical home

19. …So, how are we doing?

20. National Survey of Children with Special Health Care Needs (NS-CSHCN): • 2009-10 telephone survey of CYSHCN < 18 y.o. • Topics covered: • Health and functional status • Health insurance status and adequacy of coverage • Access to health care — including types of health care services needed and any unmet needs for care • Preventive medical and dental care, and specialty services received • Family-centeredness of child’s health care and care coordination • Access to Community-Based Services • Transition to Adulthood • Impact of child’s health on family • Demographics of child and family • Education, family structure, primary language spoken in the home

21. CSHCN age 12-17 years who receive services needed for transition to adult health care, work and independence Nationwide vs. Colorado 40 42.1 60 57.9 Outcome successfully achieved Outcome not achieved

22. What are the challenges?

23. Patient Challenges • Many transitions at once: • Graduate HS, move away, new job • New relationships, new opinions about politics and religion • Choices about alcohol, tobacco, drugs, sexual activity • Focus on independence

24. Family Challenges • Close ties with pediatric caregivers • Considered an adult at 18 y.o.  privacy becomes an issue • Lack of confidence in: • Young adult’s ability to adequately provide self-care • Adult medical team

25. “If it is a child, they will give them the pain medicine without questions, but when you turn adult, it’s a different thing. Like you’re not really in pain, you just want medications.” - Family member of a patient with Sickle Cell Disease Reiss J, Gibson R, Walker R., Health Care Transition: Youth, Family, and Provider Perspective. Pediatrics. 2005; 115;112.

26. Pediatric Care Team Challenges • Tight bond with patient and family • Limited contact with adult providers and services • Lack of trust in adult healthcare system/providers • Lack of training on how or when to start transition

27. Institutional & System Challenges • Aging out of treatment • Insurance coverage/funding changes with age: • Limited options for personal health insurance • Discontinued from parents’ health insurance • Title V ends at 21 • Change in eligibility requirements: Supplemental Security Income (SSI), Medicaid • Services funded by Medicaid decrease after 21 • Poor reimbursement for transition services

28. Adult Care Team Challenges

30. Internists’ Perspectives • Study goal: Understand concerns of adult providers regarding transition for young adult patients with childhood-onset conditions • 2 stage mail survey from Aug. 2001-Nov. 2004: • Stage 1: Providers stated concerns regarding accepting care of transitioning young adult patients • Stage 2: Providers rated 45 items on a scale of how much the concern impacted ability to care for patient

32. Internists’ Transition Concerns Patient’s maturity Systems issues Patient’s psychosocial needs Family involvement Transition coordination My medical Competency

33. To review up to this point… • CYSHCN are living longer and need a smooth, coordinated transition for improved health outcomes • We are not doing a great job preparing patients for the transition to adult medicine • As internists, we have a number of concerns and limitations when it comes to taking care of CYSHCN

34. What should a transition plan look like? TRANSITION

35. Expert opinion and consensus on practice-based implementation of transition for all youth beginning in early adolescence • Roadmap for transition and decision-making algorithms for all youth beginning at 12 y.o.

37. Elements of Health Care Transition • Clinic Policies • Registry • Preparation • Planning • Transfer of care • Transition Completion

38. 1. Clinic Policies • Pediatrics: • When will the transition process begin? • When is the transfer expected to happen? • Adult Medicine: • What age will the clinic start seeing patient? • Outline of what to expect

40. 2.Registry • Pediatrics: • Identify transition-age youth, especially CYSHCN • Start by 12-14 y.o. • Adult Medicine: • Identify young adults by level of complexity • Monitor health care needs

41. 3. Preparation – Pediatric Team • Prepare patients/family for success in adult care system & envision a future: • Visits without parents • Discuss illness, meds, troubleshooting • Self-management skills • Assess Readiness: • Transition Readiness Assessment Questionnaire (TRAQ): • 2 domains: self management and self advocacy • Identifies areas for more education

43. 3. Preparation – Adult Team • Discuss how to use/access services in adult model of care • Continue to assess and address gaps in knowledge and skills • TRAQ

44. 4. Planning – Pediatric Team • Health Care Transition Action Plan: • Checklist of goals/expectations prior to transfer • Portable Health Summary: • Chronological account of patient’s past and current medical problems • Emergency Plan: • Actions to be taken during urgent/emergent events

47. 4. Planning – Adult Team • “Get acquainted” visit • Up to one year before transfer • Continue to use and update: • HCT Action Plan • Portable medical summary • Emergency care plan

48. 4. Planning – Team Discussion • Insurance • Guardianship • Community resources

49. 5. Transfer of Care – What age? • For most, between 18-21 y.o. • Other factors to consider: • Is the patient medically stable? • Is the illness terminal? • Has transition readiness been assessed? • What skills are still needed to make a successful transition?

50. 5. Transfer of Care • Pediatrics: • Direct communication with adult PCP and team • Transition package: • Transfer letter • Health summary • Adult Medicine: • Review history and talk to referring physician • Introduce patient to clinic