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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. Transition to Adulthood Life Long Health Issues Require Life Long Skills.

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Transition to Adulthood Life Long Health Issues Require Life Long Skills

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  1. 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 Transition to AdulthoodLife Long Health Issues Require Life Long Skills

  2. 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 Transition to AdulthoodLife Long Health Issues Require Life Long Skills

  3. Don’t Want to Grow Up: age adults say they want to remain(USA Today Poll 2000)

  4. 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 Overview

  5. Transition is a Life Spanprocess 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 Health & Wellness: The Marathon

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

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

  8. Skills: Before Transfer

  9. 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)

  10. 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.

  11. “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 Health & Wellness: Being Informed

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

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

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

  15. Healthy &Getting Ready….Roles and responsibilities

  16. Getting Ready:Shared Decision Making

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

  18. 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)

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

  20. 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) 9 Easy steps to Plan a Successful Transition (3)

  21. *Adapted from: Goldnring JM, Cohen E. Getting into adolescent heads. Contemp Pediatr 1988; July:7590

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

  23. Healthy & Ready…… To GO!

  24. 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. Start early Ask and reinforce life span skills prepare for the marathon Assist youth to learn how to extend wellness Reality check: Have all of us done the prep work for the send off before the hand off?

  25. 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

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