Transitions: Growing Up Ready to Live! S2040-S2129: Helping Adolescents with Special Health Care Needs Grow up

and Move On

Transition Overview: Policy, Data,

Practice & Trends

Nancy Murphy, MD, FAAP, FAAPMRUniversity of Utah, Salt Lake City

Patience White, MD, MA, FAAP

Health and Ready to Work National Center, Washington, DC

AAP NCEOctober 2008

Faculty Disclosure Information

In the past 12 months, we have no relevant financial relationships with the manufacturer(s) of any commercial

product(s) and/or provider(s) of commercial services discussed in this CME activity.

We do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.

Seminar Agenda

• Discuss opening questions (10-15 min)• Review data on transition from multiple

points of view 15 minutes)• Small group discussions(20 minutes)• Report out from small groups (20 minutes) • Review Tools (10 minutes)• Wrap up (10 minutes)

Opening Questions

• What do you remember about your adolescent years and health care-when did you leave your pediatrician and move to an internist? Did you leave actively or passively?

• Why did you choose to come to this seminar?

Learning Objectives

1. Define transition and its components 

2. Discuss Data, Policy & Trends

3. Share transition approaches in your practices 

What is Health Care Transition?

Components of successful transition

• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence

• Inclusion in community life • Start Early

Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.

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

What

does the

Data

tell us?

What do national associations say about transition?

IOM QUALITY MEASURES Health Care Processes Should Have:

• Care based on continuing healing relationships

• Customization based on patient needs and values

• Patient as source of control

• Shared knowledge and free flow of information

• Safety

• Transparency

• Anticipation of needs

SOURCE: Crossing the Quality Chasm 2001

MCHB CORE National Performance Measures

Transition & ………

1. Family

2. Screening

3. Medical Home

4. Health Insurance

5. Community

6. Transition

1.Youth Involvement

2.Secondary Disabilities

3.Peds to Adult

4.Extend Dependent Coverage

5.Entitlement to Eligibility

6. Inclusion in Community

HRSA/MCHB Block Grant: NPM #6

Transition to Adulthood

Youth with special health care needs

will receive the services necessary to make transitions to

all aspects of adult life, including adult health care, work,

and independence. (2002)

SOURCE: BLOCK GRANT GUIDANCE

New Performance Measures See p.43

ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

1. Identify primary care provider

2. Identify core knowledge and skills

3. Knowledge of condition, prioritize health issues

4. Maintain an up-to-date medical summary that is portable and accessible

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance coverage

Pediatrics 2002:110 (suppl) 1304-1306

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

What

does the

Data

tell us?

What do youth say they want in transition?

Youth With Disabilities Stated Needs for Success in Adulthood

PRIORITIES:

1 Career development (develop skills for a job and how to find out about jobs

they would enjoy)

2 Independent living skills

3 Finding quality medical care (paying for it; USA)

4 Legal rights

5 Protect themselves from crime (USA)

6 Obtain financing for school (USA)SOURCE: Point of Departure, a PACER Center publication Fall, 1996

Survey - 1300 YOUTH with SHCN / disabilities

Main concerns for health:• What to do in an emergency,• Learning to stay healthy*• How to get health insurance*, • What could happen if condition

gets worse.

SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995

*SOURCE: National Youth Leadership Network Survey-2001300 youth leaders disabilities

Youth are Talking: Are we listening?

What would you think

a group of “successful”

adults with disabilities

would say is the most

important factor

that assisted them

in being successful?

FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?

Self-perception as not “handicapped”

Involvement with household chores

Having a network of friends

Having non-disabled and disabled friends

Family and peer support

Parental support w/out over protectiveness

Source: Weiner, 1992

FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?

Self-perception as not “handicapped”

Involvement with household chores

Having a network of friends

Having non-disabled and disabled friends

Family and peer support

Parental support w/out over protectiveness

Source: Weiner, 1992

What

does the

Data

tell us?

How are youth with SHCN doing in adulthood?

Outcome Realities

• Nearly 40% of youth with SHCN cannot identify a primary care physician

• 20% consider their specialist to be their ‘regular’ physician

• Primary health concerns are not being met

• Fewer work opportunities, lower high school grad rates and increased drop out from college

• YSHCN are 3 X more likely to live on income < $15,000

CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

What

does the

Data

tell us?

How prepared are youth for managing their care in the adult health care system?

Internal Medicine Nephrologists (N=35)

Survey Components Percentages

Percent of transitioned patients < 2% in 95% of practices

Transitioned pats. came with an introduction 75%Transitioned patients know their meds 45%Transitioned patients know their disease 30%Transitioned patients ask questions 20%Parents of transitioned patients ask questions

69%

Transitioned Adults believed they had a difficult transition

40%

Maria Ferris, MD, PhD, MPH, UNC Kidney Center

What

does the

Data

tell us?

What do Adult providers say they want to assist them in receiving youth w SHCN?

Survey of Adult Health Care Providers in NH 2008: Results

• Who-180 responses: 81% Fam, 9% internist, 8% NP, 2% Med-peds• Communication-57-46% rarely/never received trans summary

or call. 48% young adult experienced care gap• Barriers- time, staffing, reimbursement issues inadequate

support from specialists • Comfort Level-

– More- asthma, inc BP, Mental health, DM– Less- CF, Chromosome/met disorders, autism, technology dep

• What would Help- 95% written summary and support from specialists, 91% want to speak w prior provider, 84% written educational info about condition

• When-78% between 18-21 years

What

does the

Data

tell us?

FAMILIESNatl CSHCN Survey 2005-06 of families with CYSHCN

Got Data?

www. cshcndata.orgData Resource Center National Survey for CSHCN

Nov.2007

RI Data… NATL

CSHCN 13.9

0-5 8.8

6-11 16.0

12-17 16.8

Transition services received

41.2

NS-CSHCN 2005Section 6: Family Centered Care - Transition Qs

49.3%

NO

If YES, have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults?

53.8%

NO

46.2%

YES

Have [CHILD’S NAME]’s doctors or other health care providers talked with you or [CHILD’S NAME] about his/her health care needs as he/she becomes an adult?

NS-CSHCN 2005Section 6: Family Centered Care - Transition Qs

78.7%

NO

Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S

NAME] becomes an adult?

Never11.9%

Sometimes16.3%

Usually23.0%

Always48.7%

 

How often do [CHILD’S NAME]’s doctors or other health care providers encourage him/her to take responsibility for his/her health care needs, such as:  

IF 5-11 Years: learning about (his/her) health or helping with treatments and medications?

IF 12+ Years: taking medication, understanding (his/her) health, or following medical advice?

What

does the

Data

tell us?

PED PROVIDERSAAP/HRTW surveys of providers using AAP consensus statement

1. Identify primary care provider

2. Identify core knowledge and skills

3. Knowledge of condition, prioritize health issues

4. Maintain an up-to-date medical summary that is portable and accessible

5. Apply preventive screening guidelines

6. Ensure affordable, continuous health insurance coverage

Pediatrics 2002:110 (suppl) 1304-1306

A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

Two HRTW Surveys: Results 2007-8

About Those Who Responded

• 52 physicians / 26 states• Most involved with Medical Home projects• 47 pediatricians, 4 Med-Peds, 1 Family

Consensus Statement- Knowledge

• 50% were familiar • 6 % unsure• 42% not

Barriers to Transition *rated extremely important or very important (combined)

HRTW Questionnaire 2006-2007

Medical HomesN=52

in 26 states

NACHRIHospitals

N=19 in 18 states

StatesN=42 of 59 States/Territories

Lack of capacity of adult providers to care for youth/adults with SHCN

83% 85% 95%

Lack of understanding of reimbursement eligibility differences between adults and children with special health care needs

65% 63% Not Asked

Fragmentation of care among systems providers

87% 73% 89%

Lack of knowledge about or linkages to community resources that support youth in transition

85% 58% 50%

Health Care Health Care Transition ActivitiesTransition Activities

Medical HomesN=5226 states

NACHRIHospitalsN=19 18 states(12%)

Shriners HospitalsN=20 15 states & Canada (91%)

State Title V AgenciesN=42 of 59 States/Territories(71%)

Create an individualized health transition plan 34% 43% 25% 50%

Promote health management, self care, and prevention of secondary disab.

63% 79% 95% 72%

Discuss legal responsibility for medical decisions and health records <18.

21%Written

81% assent

58% 100% 62%

Recruit adult primary /specialty providers to assume care of youth with special needs

56% 58% 35% 53%

Results: Core Knowledge & Skills

36% have forms to support transition (82% want help)

39% provide educational materials regarding transition (48% want help)

58% help youth/families plan for emergencies (31 % want help)

68% assist with accommodations school/studying or work (21% want help)

35% Make transportable medical record for some patients (43% want help)

Results: Core Knowledge & Skills

63% Promote independence in health condition management

(25% want help) When youth become 18-writen policy to discuss? 77% no Do you seek verbal assent? 81% Written 23%

50% Refer to skill-building experiences (35% want help)

33% Create individualized health transition plan for at least some patients (39% want help)

65% Screen to identify YSHCN who need transition services (29% want help)

Results: Overall practice assessment

Rate your practice with regards to transition processes in general:

- not interested 2% - not have, interested 29% - beginning stages 25%

- working on policy/processes 19% - have policy and processes integrated 13%

THANK YOU ANY QUESTIONS?

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

How do have systems change so that the rookie learns the rules of the game and we leave no knot untied between pediatric and adult healthcare?

• Research states policies and procedures among stakeholders are essential so that– Ensures consensus– Ensures mutual understanding of

the processes involved– Provides structure for evaluation

and audit

Next Steps• Form groups of 8-10• Identify recorder and reporter• Discuss

1. How many of you have a policy in your practice about when youth will be transferred to adult practices?2. If yes, what does it say? Is it posted for families and youth to see?3. Craft examples of such a policy and how you will/did develop such a policy4. What are the top 3 practice processes that would help you the most?

• Report out

Transition Policy Template

• Definition-what is it? See transition definition of Soc

Adolescent Med/BMCH • Outcome • Timeline- age of initiation and explanation of exceptions

• Components- see AAP consensus statement

• Practice Processes• Evaluation- PDSA cycle

Nancy Murphy, MD, FAAP, FAAPMRnancy.murphy@hsc.utah.edu

Patience White, MD, MA pwhite@arthritis.org

www.familyvoices.org

www11.georgetown.edu/research/gucchd/nccc

Medicalhomeinfo.org

www.hdwg.org/catalyst/index.php

State-at-a-GlanceChartbook onCoverage and Financingof Care for Children andYouth with Special Needs

http://www.championsinc.org