1. Transition to Adulthood Life Long Health Issues Require Life Long Skills Patience H. White, MD, MA, FAAP Chief Public Health Officer Arthritis Foundation pwhite@arthritis.org Patti Hackett, MEd Co-Director Healthy & Ready to Work National Resource Center pattihackett@hrtw.org

2. Transition to Adulthood Life Long Health Issues Require Life Long Skills Patience H. White, MD, MA, FAAP Chief Public Health Officer Arthritis Foundation pwhite@arthritis.org Patti Hackett, MEd Co-Director Healthy & Ready to Work National Resource Center pattihackett@hrtw.org

3. Don’t Want to Grow Up: age adults say they want to remain (USA Today Poll 2000) Age (yrs)Men (%)Women (%) 5-1088 11-14 4 6 15-203420 21-252928 26-30810 31-35710 36-4037 41 and up79

4. Overview Transition 3 components Tools: Use/Adapt Dialogue: Qs & What ifs….  Health & Wellness - informed - stay well  Getting Ready - prep - speak up - be heard - take charge  To GO - transfer

5. Health & Wellness: The Marathon Transition is a Life Span process UTERO  FOREVER Not a sprint, it’s a marathon YOUTH: self-determination skills + aspirations are supported FAMILIES’/PROVIDERS’ beliefs, values, expectations Cultural beliefs & practices are honored

6. Health & Wellness: Transitions n Adult body n Mature (abstract) cognitive style n Separate from family/leave family home n Sustained peer relationships n Intimate relationships n Increasing autonomy….Interdependence n Define a productive adult role

7. Health & Wellness: Youth Viewpoint n Preoccupation with: body & physical changes n Strong need to "belong" n Primacy of the peer group n Experimentation and risk-taking n More like those without a diagnosis than different

8. IssuePaediatricAdult Age-relatedGrowth& development, future focussed Maintenance/decline : Optimize the present FocusFamilyIndividual ApproachPaternalistic Proactive Collaborative, Reactive Shared decision-making With parentWith patient ManagementPrescriptiveCollaborative Non-adherence  Assistance< tolerance Procedural PainLower threshold of active input Higher threshold for active input Tolerance of immaturity HigherLower Coordination with federal systems Greater interface with education Greater interface with employment Care provisionInterdisciplinaryMultidisciplinary # of patientsFewerGreater

9. Skills: Before Transfer IssuePedsAdultSkillsWho Focus FamilyIndiv. Decision Making parentpatient Care # of patients

10. Structured Observation: Adult Med Visit Pre-appt - Essential Qs to be asked - Essential Qs YOU will ask Appt: - Observe (attitudes & approach) - Offer questionnaire Post-appt - Lessons Learned - Skill to learn (adult feedback)

11. Health & Wellness: physician viewpoint 7% written transition plans YSHCN 21% had transferable medical record 36% discussed long term plans 43% discussed social/recreation 57% discussed sexuality 71% discussed jobs and education. * All practices wanted information about office forms for transition care plans, resources, coding, and screening tools for adolescent health and risk taking.

12. Health & Wellness: Being Informed “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. 1998; 12:363-374

13. Health & Wellness: Baseline Temp Respiration Count Urine output Bowel pattern “The enemy”

14. Prep for Doc Visit: 5 Qs GOALS: To improve patient reporting of health issues and symptoms To improve skills in health care management/self-monitoring 1. Report by body systems; which ones are critical to monitor for their health issues 2. Report comparing “norm” baselines; when to call to Doc  increase/decrease rates 3. Prepare 5 questions prior to visit. (enter question in the correct body system)

15. Health & Wellness: Beyond the Diagnosis SECONDARY DISABILITIES - Prevention/Monitor - Mental Health, High Risk Behaviors AGING & DETERIORATION - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

16. Healthy & Getting Ready….Roles and responsibilities

17. Getting Ready: Shared Decision Making ProviderParentYoung Person Major responsibility Provides careReceives care Support to parent and child managesparticipates consultantsupervisormanager resourceconsultantsupervisor

18. Healthy & Ready…. Informed Decision Making 1. Privacy – Records 2. Consent – Signature (signature stamp)  Assent to Consent  Varying levels of support  Stand-by (health surrogate)  Guardianship (limited  full)

19. 9 Easy steps to Plan a Successful Transition ASPIRATIONS: What do you want to do when you are older? - Next year? - Five years? - TEACH: - What can you tell me about your medical issues? - Do they affect you from doing what you want in the day? OPINION: - What do you think of the…? - be open and honest.. listen and be “askable”… - involve in decision making (assent to consent, give them a sense of competence)

20. 9 Easy steps to Plan a Successful Transition (2) CHORES: Are you doing chores? ATTENDANCE: How are you doing in school? PLANNING: How are you doing with your transition plan?

21. 9 Easy steps to Plan a Successful Transition (3) PARTICIPATION: What do you doing when you are not in school? CAREER: What kind of work/career do you want to do? STAY WELL: Are you taking care of your health? (HEADS)

22. *Adapted from: Goldnring JM, Cohen E. Getting into adolescent heads. Contemp Pediatr 1988; July:7590 H Home (relationships, social support, household chores) E Education (school, exams, work experience, career) Exercise A Activities (peer network, time away from home) · Ambitions Affect D Drugs, cigarettes, alcohol Diet (calcium, vitamin D, weight, caffeine, soft drinks) Dental care Driving (learning, use of public transportation) S · Sex (concerns, periods, contraception, sexual health, puberty) Sleep

23. Medical & Other Evidence Portable medical Summary Medical Summary Current Issues History & Genetic Background Definition of Disability Celebrate the paperwork Increase Knowledge (ICD- 9/CPT) Templates

24. Healthy & Ready…… To GO!

26. Bottom line: with or without us- youth and families get older and will move on…What can make it easier; do what’s in your control and support youth to tackle what’s their control. 1. Start early 2. Ask and reinforce life span skills prepare for the marathon 3. Assist youth to learn how to extend wellness 4. Reality check: Have all of us done the prep work for the send off before the hand off?

27. Patience H. White, MD, MA, FAAP Chief Public Health Officer Arthritis Foundation pwhite@arthritis.org Patti Hackett, MEd Co-Director Healthy & Ready to Work National Resource Center pattihackett@hrtw.org www.hrtw.org