Transition to Adulthood Life Long Health Issues Require Life Long Skills Patience H. White, MD, MA,...

Transition to AdulthoodLife Long Health Issues Require Life Long Skills

Patience H. White, MD, MA, FAAPChief Public Health Officer

Arthritis [email protected]

Patti Hackett, MEdCo-Director

Healthy & Ready to Work National Resource Center

[email protected]

Don’t Want to Grow Up: age adults say they want to remain

(USA Today Poll 2000)

Age (yrs) Men (%) Women (%)

5-10 8 8

11-14 4 6

15-20 34 2021-25 29 2826-30 8 10

31-35 7 10

36-40 3 7

41 and up 7 9

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

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

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

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

Issue Paediatric Adult

Age-related Growth& development, future focussed

Maintenance/decline:Optimize the present

Focus Family Individual

Approach PaternalisticProactive

Collaborative,Reactive

Shared decision-making

With parent With patient

Management Prescriptive Collaborative

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

Skills: Before Transfer

Issue Peds Adult Skills WhoFocus Family Indiv.

Decision Making

parent patient

Care

# of patients

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)

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.

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

Health & Wellness: Baseline

• Temp

• Respiration Count

• Urine output

• Bowel pattern

• “The enemy”

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)

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

Healthy & Getting Ready….Roles and responsibilities

Getting Ready: Shared Decision Making

Provider Parent Young Person

Major responsibility

Provides care Receives care

Support to parent and child

manages participates

consultant supervisor manager

resource consultant supervisor

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)

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)

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?

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)

H Home (relationships, social support, household chores)

EEducation (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)

SSex (concerns, periods, contraception, sexual health, puberty)

Sleep

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

Healthy & Ready…… To GO!

The Transition ProcessThe Transition Process

Referral & Transfer of Care

Pediatric Care Adult Care

Transition

SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go: Transition From Pediatric to Adult Health Care for Adolescents With Chronic

Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA, 2003

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?

Patience H. White, MD, MA, FAAPChief Public Health Officer

Arthritis [email protected]

Patti Hackett, MEdCo-Director

Healthy & Ready to Work National Resource Center

[email protected]

Transition to Adulthood Life Long Health Issues Require Life Long Skills Patience H. White, MD, MA,...

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