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Health Care Transition

For Patients with Chronic Health Conditions

David Wood, MD, MPHwooddl@etsu.edu

August 1, 2015

http://hscj.ufl.edu/jaxhats/

Disclosure Statement of Financial Interest

I, David WoodDO NOT have a financial

interest/arrangement or affiliation with one or more organizations

that could be perceived as a real or apparent conflict of interest in the context of the subject of this

presentation.

Objectives

Understand the need for supported transition to adult hood and adult care for youth with chronic health conditions Implications for life trajectory and adult health

outcomes Discuss Barriers to Transition to Adult Care Discuss approaches for health care transition

Care coordination Self Management support JaxHATS experience with this population

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Changing Epidemiology of Diseases Arising in Childhood

About 750,000 youth with special health care needs turn 18 each year; Most will live well into adulthood Cystic fibrosis: median survival is 40 Sickle cell disease: Mid 40s

Cerebral Palsy In US ~800,000 people have CP; >400,000 are adults 85% of young adults with CP will reach age 50, 70%

will reach age 60; Spina Bifida

80% probability of survival until age 30Murphy KP, et Al. Dev Med Child Neural 1995;37:1075–84.Frisch and Msall. Developmental Disabilities Research Reviews 18:-84–94 (2013) Hemming, et. Al. Developmental Medicine & Child Neurology 2006, 48: 90–95

Oakeshott, et. Al. Arch Dis Child. 2012Kancherla. Birth Defects Research 2014

Increasing Life Expectancyin Persons with Spina Bifida

Cambridge Cohort born in late 1960s

New York Cohort born in late 1980-2000s

Transfer of CareDiscrete event, physical transfer

from a pediatric to an adult provider; should occur between ages 18-21+

Transition PreparationIncreased responsibility for

health care self-management; understanding and planning for changes in health needs, insurance, and providers in adulthood; should occur

across ages 12-21+ The purposeful, planned movement

of adolescents and young adults from child-centered to adult-oriented health care systems.

Health Care Transition (HCT)

What is Health Care Transition?

Successful Transition Patients are engaged in and

receive on-going patient-centered adult care.

AAP Consensus Statement, 2011

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Why is HCT Important? Without support during transition youth may:

Lose of insurance Decreased access Decreased medication adherence Increased ER visits, hospitalizations Deterioration in health; poor out comes

• HIV-decreased CD4 counts; Diabetes-worsening control; Transplant-rejection; Congenital Heart Disease—premature death

Institute of Medicine, 2007; Boyle et al. 2001; Callahan et al. 2001; Betz 2003; Freyer et al. 2008; Tuchman et al. 2008), Watson 2000; Annunziato et al. 2007; Gurvitz et al. 2007; Dugueperouxet al. 2008; White 2002; Williams 2009. AHRQ Technical Brief #15; 2014

Lifespan health trajectory is shaped by risk and protective factors

Halfon, Inkelas and Hochstein, 2000

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FACTORS IMPACTING HEALTH CARE TRANSITION

Factors Impacting HCT

Social Trends Youth development Health insuranceAvailability of adult providers Preparation by pediatricians and

pediatric specialists

Source: U.S. Census Bureau , 1997

Secular Changes:Emerging Adulthood 18-29

More youth pursuing higher education 1940’s—14% post HS ed. 1990’s—60% Mixed paths of education & vocation Including youth with serious health conditions

Age of marriage is increasing 1940-1950’s it was 20 years of age; 1990’s it rose to 25-29 years of ageIncrease in length of transition

•—up to late 20’s, early 30’s.

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Factors Impacting HCT Social Trends Youth development Family Barriers Health insuranceAvailability of adult providers Preparation by pediatricians and

pediatric specialists

Cognitive Development: Piaget’s Formal Operational Thought

EARLY (11-13)

MIDDLE (14-16)

LATE (17-21)

Concrete thought

No future perspective

Abstraction

Has future perspective; not always used

Established abstract thought

Future oriented

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Adolescent Brain Development

Somerville, Jones, & Casey (2010)

Adolescents use rational calculation to perceive risks and benefits

They do not believe they are invulnerable! May even overestimate key risks (lung

cancer from smoking; HIV risk; death) BUT

They Lack of future orientation => discount risks

AND More intense drive for immediate benefit Impulsive –lack of development of executive fxn Highly influenced by peer/social group

Fischhoff (2008); Jamieson & Romer (2008); Reyna & Farley (2006)

Medical Decision-Making and Disease Self Management

Immediate benefits outweigh long term risks

• Inconvenience of Bowel program vs. complications from constipation

• Taking daily medications requires commitment to routine

• Pain of Depo shot vs. risk of pregnancy• Staying out with friends vs. self-

catheterization Future orientation & abstract throught

needed for competent self management

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Factors Impacting HCT

Social Trends Youth development Family Barriers Health Insurance-US

Availability of adult providers Preparation by pediatricians and

pediatric specialists

Family Barriers Readiness to let go

Attachment to pediatric providers Recognition of child’s ability to care for

self and self-advocate Poverty and disadvantaged

environment Less services and supports Perhaps more natural supports

Family cohesion and communication Stressed from many angles

Family Functioning, Parent-Child Conflict Predicts Transfer of Self Care Responsibilities From Parent to Youth

Stepansky, et. Al. Medical Adherence in Young Adolescents with Spina Bifida:Longitudinal Associations with Family Functioning. J Pediatric Psychology. 2009

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Factors Impacting HCT Social Trends Youth development Family Barriers Health Insurance-US

Availability of adult providers Preparation by pediatricians and

pediatric specialists

Inadequate Health InsuranceAging out of health care plans/services

Medicaid—18

SCHIP/KidCare—19

Title V Safety Net funds--21

Benefits in temporary jobs often limited

Change in eligibility rules for SSI

Loose Medicaid in non-expansion states

Cost barriers for families to keep youth on parental work-related insurance

Uninsured Young Adults in the US

Collins et. Al., Realizing Health Reform’s Potential How the Affordable Care Act Is Helping Young Adults Stay Covered. Commonwealth Fund, 2011.

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Youth with SHCN Often Lack Health Insurance

Callahan and Cooper. Pediatrics. 2007:119;1175

Percentage of Uninsured Young Adults Declined from 2011 to 2013; Gains Were Largest Among Low-Income Young Adults

Note: Totals may not equal sum of bars because of rounding. FPL refers to federal poverty level.Source: The Commonwealth Fund Health Insurance Tracking Surveys of Young Adults, 2011 and 2013.

Percent of young adults ages 19–29

22 21

4841

27 2715 16

9 9

1712

21

19

21 17

13 1113

7

0

25

50

75

100

2011 2013 2011 2013 2011 2013 2011 2013 2011 2013

<133% FPL 133%–249% FPL

Total

3934

4844

27

Insured now, time uninsured in past year

Uninsured now

28

400% FPL or more

250%–399% FPL

2216

70

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Factors Impacting HCT Social Trends Youth development Family Barriers Health Insurance-US

Availability of adult providers Preparation by pediatricians and

pediatric specialists

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Comfort of Adult Providers by Condition 2008 New Hampshire

Why Internists Won’t Take YSHCN

Lack of training in conditions arising in childhood

Lack of Time/reimbursement Lack of support for care coordination Lack of Access to super-specialists

adolescent medicine; adult congenital heart; adult spasticity management, etc.

Lack of medical summary /communicationOkumura et al, JGIM 2008; AAP Periodic Survey 2008; Thompson et al, Pediatrics, 2009; Peter N. Pediatrics. 2009; 123;417

Factors Impacting HCT Social Trends Youth development Family Barriers Health insuranceAvailability of adult providers Preparation by pediatricians and

pediatric specialists

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National Survey of Parents of Children with Special Health Care Needs

17,114 parents of YSHCN aged 12-17

Only 40% of parents got transition communication1. Shifting care to an adult provider2. Future adult health care needs3. Upcoming eligibility changes in health insurance4. Encouraging youth to take responsibility for their care

Less likely to receive HCT counseling if male, non-white, public/no insurance

More likely if have a medical home (55% vs. 29%)

Ref: McManus et al, Pediatrics, 2013; Lotstein et al, Pediatrics 2009

How are we doing? Parents of youth with Cerebral Palsy report low rates

of transition counseling 46% were counseled on self-management; 29% discussed transfer

to adult providers

Parents of youth with Profound ID report not feeling prepared to move to adult care. Limited preparation; Fragmented care in adult system; Their

suggestions to improve transition: early start, information provision, coordination between pediatric and adult care.

Only 21.6% of young adult respondents in the 2007 Survey of Adult Transition and Health made a successful transition to adult healthcare. 24% of young adults had received key transition counseling

servicesBlackman and Conaway. Adolescents with Cerebral Palsy. Clinical Pediatrics. 2014Bindels-de Heus, et. Al. Intellectual And Developmental Disabilities; 2013, Vol. 51, No. 3, 176–189Sawicki, Wood, et. Al. Pediatrics. 2011

“ When we left pediatric care it was as if someone flipped the switch and turned the lights off.”

-- parent of child with developmental disability

“ When we left pediatric care it was as if someone flipped the switch and turned the lights off.”

-- parent of child with developmental disability

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HOW TO IMPROVE HEALTH CARE TRANSITIONS

Transition Framework

Changing Insurance

Education/Job Planning

Developing Self-Care Abilities

Changing Medical CareAccess to

Continuous, High QualityMedical Care

MaximizedQuality of Life

And Role Attainment

Preparation ProcessOutcome

Ref: Lotstein et al, Pediatrics 2011

National Coordinating Centre for NHS Service Delivery and OrganisationResearch and Development (NCCSDO) (www.sdo.lshtm.ac.uk)

Integrated Model of HCT

Youth

Parent/Family

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Evidence for Transition Planning

Most research from outside the US Studies done in CF, Type 1 Diabetes Key findings

Contact with adult providers before transfer Involvement of care coordinators in

transition preparation and system navigation

Bloom et al, Journal of Adolescent Health, 2012

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New Models of Health Care Transition Clinics

• Sub-specialty based: Cystic Fibrosis, Diabetes, Sickle Cell Dz.,

Intellectual Disabilities (Down Syndrome), Nephrology (STARx Program at UNC), PedsCancer Survivor/Late Effects Clinics

Primary care based: JaxHATS Program at University of Florida UCLA Med-Peds Transition Care Program Texas Childrens/Baylor Transition Program

TWO KEY ELEMENTS:

1. Self management support

2. Care coordination

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SELF MANAGEMENT SUPPORT

Encourage Patient Self Management and Adherence

Make patients — including those who have cognitive disabilities — central members of their health-care team Have them participate in care decisions

Help them build self-advocacy skills, Speak directly to them about their care

Caregivers to step into a supportive, rather than directive, role.

Arrange for formal neurocognitive and functional testing of patients who have cognitive impairment

Refer to disability-related advocacy and support groups for youth and young adults

Wagner. Gillette Children’s Hospital. Pediatric Perspectives. 2007

Transition Readiness (TR) Assessment and Training

Assess readiness to transition Self management skills Making appointments and talking with providers Understanding of insurance Other life goals

Specific Transition Readiness Visits Assess transition readiness Education, negotiate transition goals Homework assignments

• make medication list/calendar; • bring list of questions for the doctor or nurse• next visit be in room alone with doctor

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TRAQ:Transition ReadinessAssessment Questionnaire

Validation of Transition Readiness Assessment Questionnaire (TRAQ)

High reliability overall; Cronbach’s alpha 0.94) Good reliability for 4 of the 5 subscales (Cronbach’s

alpha = .90 to .77) All 5 subscales increase with age (p < 0.005) Gender differences found (females > males

adjusted for age)

Scores go up with HCT intervention Makie—58 adolescents (16-18) RCT to: a) usual

care; vs. b) 1 hour of nursing education on HCT TRAQ self-management scores increased by 0.8

unit vs. 0.2 for controls(p < 0.05)Sawicki, Wood, et. Al, 2007; Wood, et. Al, Academic Pediatrics 2014Mackie AS, et al. Heart 2014;100:1113–1118. doi:10.1136/heartjnl-2014-305748

Intervention Trials in HCTMD2Me

81 Adolescents with IBD, CF and T1D MD2Me recipients received a 2-month intensive Web-based and

text-delivered disease management and skill-based intervention MD2Me recipients also had access to a texting algorithm for

disease assessment and health care team contact.

Huang, et. Al. PEDIATRICS Volume 133, Number 6, June 2014

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Huang, et. Al. PEDIATRICS Volume 133, Number 6, June 2014

Motivational Interviewing

Sarah J. Erickson, PhD; Melissa Gerstle, BA; Sarah W. Feldstein, MS Arch Pediatr AdolescMed. 2005;159(12):1173-1180

CARE COORDINATION

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“Care coordination is a process that facilitates linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health.”

Benefits of Care Coordination Allows for clinical and process improvements Reduces health care costs

Reduced hospital/ER visits Improves family satisfaction Helps families who are struggling to access

needed services and need professional assistance to do so

Links between health care and educational/vocational systems are important for youth with special health care needs

AAP Policy Statement on Care Coordination

Key Elements of a Patient-Oriented HCT Care Plan

Information to make the patient an informed consumer Know their medication, devices,

equipment, supplies... Basic history, physicians, providers,

insurance Know how to take care of themselves

on a day-to-day basis Know what to be concerned about

Know what to do in an emergency

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Archive the Transition Information Form on a secure MY PLACE site at HealthyTransitionsNY.org

Key Elements of a Provider-Oriented Transition Care Plan Provides good hand-off to adult

providers—primary care and specialists Key history summarized Multi-disciplinary input Recommends future supports and

treatment• Anticipates future complications• Recommends monitoring approach and

frequency

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Florida’s clearinghouse for

health care transition information

www.FloridaHATS.org

National Center for Health Care Transition

ImprovementCollaborative

www.gottransition.org

Educational Materials

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