Illinois Chapter of the AAP Autism, Behavior, and Complex

Medical Needs – Downstate Conference

Erica D. Wiebe, MD 4/28/2017

I declare that neither I, or my immediate family, have a financial interest or other relationship with any manufacturer/s of a commercial product/s or service/s which may be discussed at the conference.

Understand the importance of medical, legal, educational and social transition for youth with special healthcare needs

Appreciate the current state of healthcare transition for special needs patients in the US

Recognize the various parent, patient, and provider perspectives surrounding transition

Acknowledge the components of the transition process

Consider potential process improvements or future directions for current transition models

“You grow up the day you have your first real laugh -- at yourself.”

― Ethel Barrymore

Transition is the deliberate process of moving seamlessly from child-oriented healthcare to adult-oriented healthcare.

Components

Endowment of Self-Determination

Preparation for Adult Health Care

Provisions for Work/Independence

Inclusion in Community Life

Good Preparation

Person-Centered Planning

Flexible Timing

Efficient Care Coordination

Joint Transition Efforts

An estimated 4.5 million or 18.4 % of United States youth age 12-18 have special healthcare needs

Prevalence is double that of young children age 0-5

More than 33 % of those youth have an emotional, behavioral, or developmental condition

More than ¼ with those conditions experience persistent and significant impact on their activities as a result of their condition

Fewer than ½ of youth with special needs have a designated medical home

Youth with special healthcare needs (YSHCN) are at greater risk of unmet medical needs

Limited access to mental health services

Rates of risky behaviors (alcohol and tobacco use, drug use, and unprotected sexual activity) are similar to or greater than their peers in the general population

Medical needs shift with evolution into adulthood

Failure to successfully transition contributes to significant gaps in healthcare

Negative health outcomes associated with risky behaviors

Increases in hospital admissions secondary to

Infection

Equipment failure

Poor medication compliance

Higher clinic “no show” rates

Increased healthcare costs

Increased life expectancy < 1/3 of patients with spina bifida survived beyond age

20 in 1970 vs >80% current survival rates

Rise in rates of many ND disorders 1 in 9 pregnancies results in preterm birth

Autism Spectrum Disorder currently affects 1 in 68 children

2010 survey of the Association of American Medical Colleges Except for neonatology, every pediatric specialty has

inadequate numbers of physicians to meet patient needs

Successful

Transition

Patient

Adult

Provider

Parents/

Caregivers

Pediatric

Provider

Self Reported Priorities

Career development

Independent living skills

Finding quality medical care

Emergency preparedness

Legal rights and transitions

Self protection

Financing for education

Self Reported Concerns Lack of understanding of their medical condition by

adult providers

Health insurance continuation into adulthood

Dealing with emotional attachments Their own

Their parents

The pediatric provider

Feel surrounded by support now but aren’t aware of what’s available in the future

The vast majority do not feel “listened to”

Many express worries similar to their general population peers

Adult romantic relationships

Adult friendships

Findings jobs

Fitting in at the community level

Wanting resources so they don’t always have to turn to their parents for help

Avoiding future planning

Parents feel unprepared

Most parents are not satisfied with information provision, coordination of care, access to adult health care providers, and the latter’s awareness of the healthcare needs of their offspring (Bindels-de Heus et al., 2013)

When to start the conversation?

Age 14

Earlier?

Most report needing help with the emotional and cognitive shift from parent directed care to patient directed care or, as needed, parent supported care

Do adult providers want/need their perspective?

Transition should be structured yet allow room for flexibility as patient conditions change, treatments evolve, and family dynamics fluctuate

5 parent recommendations

Give more information to parents about the options and make clear why transfer is necessary

Make transition a gradual process

Organize a joint consultation between the pediatrician and the new specialist

Give parents a copy of the medical history and referral letter

Consider ALL aspects of transition (health, community life, work, education, legal issues)

While the majority of providers report they provide patients and families with adequate transition education, most fail to implement a standardized approach (Fernandez et al., 2014)

Most report initiating conversations but feel they lack knowledge surrounding resources available in the community

An overwhelming majority struggle to document the transition process

88% of NDSC providers start the transition process AFTER 14 years of age

78% of providers report initiating conversations with families regarding transition

On average 25% of NDSC practitioners document that they provide transition information

On average, practitioners who provide transition information document doing so with 1-5 % of patients

The most commonly reported obstacle is lack of knowledge of transition resources 59% of NDSC practitioners DO NOT know of 3 or more

resources for families dealing with transition of care issues

Second most common cited obstacle is limited referral locations

Other obstacles sited include: “Don’t think about it!”

“Patient and family lack of desire to transition”

“No excuse---could refer to social work to help get things started”

Lack of perceived social work availability

Many young adults transitioned from pediatric to adult services are unprepared upon arrival Identification of patients who are actually ready?

Guardianship issues often not completed or clarified leading to various legal ramifications for adult providers

Providers remain concerned that families will not remain actively involved in the care of young adults with special needs

The parent/provider relationship is also different

Internists polled reported greater willingness to accept adult patients with conditions such as Down syndrome and CF compared to those with Autism and Spinal Muscular Atrophy

Site knowledge regarding various childhood onset disease processes

Trouble with care coordination

Technology dependence for communication and activities of daily living

Need assistance handling potential death early in the adult patient/adult provider relationship

Desire for additional training

Transition process

Child onset chronic diseases and congenital disorders

Meeting the unique psychosocial needs of this population

Specialists concerned that pediatric providers are “not letting go”

“You need not be sorry for her. She was one of the kind that likes to grow up. In the end she grew up of her own free will a day quicker than the other girls.”

― J.M. Barrie, Peter Pan

Increased focus on transition planning since the early 1990’s

Since 2001, the Department of Health and Human Services’ Maternal and Child Health Bureau (MCHB) has been collecting data on 6 core performance outcomes necessary to “create a comprehensive system of services for all children”

One of these outcomes is specific to transition

MCHB has partnered every 4-5 years with the National Center for Statistics to conduct the National Survey for Children with Special Healthcare Needs

Survey conducted 2005-2006 and again 2009-2010

A total of 17,114 interviews were completed for youth with special healthcare needs (YSHCN) between the ages of 12 and 18

Outcome #6:

“Youth with special healthcare needs who receive the necessary services to make appropriate transitions to adult healthcare, work, and independence”

Composite measure calculated by using responses to 4 component measures and their follow-up questions

“Kids think with their brains cracked wide open; becoming an adult, I've decided, is only a slow sewing shut.”

― Jodi Picoult, My Sister's Keeper

1. Assess for transition readiness

- Patient and Parent Transition Readiness Assessments

2. Plan a dynamic and longitudinal process for accomplishing realistic goals

- Institutional Transition Policy

- Privacy and Consent Policy

- Transition Flow Sheet

3. Implementation of the plan through education of all involved parties and empowerment of the patient in the areas of self care

- Provide a Portable Medical Summary

- Transfer Packets and Transfer Checklists

- Remain an available consultant to Adult Healthcare Providers

4. Document Progress

- Maintain a database of patients

Age 12-13 Age 14 Age 15-16 Age 17 Age 18-22

Healthcare Youth and Family aware of the practice’s health care transition and transfer policy

Conduct age appropriate Transition Assessment

Begin use of

- Transition Flow

Sheet

- Action Plan

- Portable HC

Summary

Update Transition Assessment and Transition Flow Sheet

Update Transition Assessment and Transition Flow Sheet

Update Transition Assessment and Transition Flow Sheet Complete transition to adult health care provider - Transfer of Care Checklist

Education IEP should start to include transition planning

IEP should continue to include transition planning

IEP should continue to include transition planning

Promote patient rights in the special education process until no longer eligible or age 22

Legal If applicable, begin Guardianship Planning Contact County Board of DD for Services and Support Administration (SSA)

Give notice to child and parent regarding the Transfer of Parental Rights at age 18 If applicable, continue and finalize Guardianship Planning

Confirm Transfer of Parental Rights

OR

Confirm finalization of Guardianship Planning

Why is it important?

Build consensus

Address fairness

Meet expectations

Allow for planning and systematic processes

Benefits?

Plan cohesion across providers

Patients, families and providers understand

What is expected in the transition process

Time frames

Potential pitfalls

Decrease gaps in care

Consistent with the law

Clarify roles of patients and parents in decision making

Create a safe and comfortable environment for those 18 and over to discuss private concerns regarding their health

Build patient competencies and patient-centeredness

Ensure consistency within the practice

Evaluate youth and young adults’ current healthcare knowledge base and skills

Identify areas that need further education

Youth/young adults and parents learn more about managing their condition and becoming ready for an adult model of care

Everyone is aware of next steps

Providers and families are able to work collectively to gain necessary skills

Why are they important?

Ensure availability of updated medical information

Ability to consolidate and communicate with clear information via Email

Fax

Phone

In person

Across health systems

Facilitate transition of care from pediatric/adolescent to adult healthcare practices

Maintain consistency from patient to patient

Assist with coordination of care across providers and subspecialties

Useful for team or individual provider models of transition

Document and track transition completion

“I am convinced that most people do not grow up. We marry and dare to have children and call that growing up. I think what we do is mostly grow old. We carry accumulation of years in our bodies, and on our faces, but generally our real selves, the children inside, are innocent and shy as magnolias.”

― Maya Angelou, Letter to My Daughter

At the national level

Work with public, private insurers and health plans on:

Outreach and education to families and patients

Care management support

Payment and quality incentives for healthcare providers

Develop youth and parent leadership on transition and education opportunities to build awareness

Continue Healthcare and Community Transition research to find more effective approaches

At the state level

Develop a statewide registry of adult healthcare providers willing to provide quality care to transitioned youth with chronic illnesses, developmental/intellectual disabilities, and mental health issues

Expand transition training opportunities for healthcare professionals of all avenues

Development of Healthcare Transitions Committees

Continue initiatives for transition education for both adult and pediatric providers

At the community level

Encourage the formation and evolution of local patient and parent support groups/organizations

Research and clinical experience is very clear – they already turn to each other but information is not always accurate

Healthcare Professionals should be available for consultation and community lecturing opportunities

At the institution level

Develop and update patient registries for tracking youth in need of transition services

Quality Improvement initiatives

Medical education curriculum changes

2012 survey suggests both perceived interest and need for organized transition curriculum that could be targeted to learners at various levels and across different specialties

Embed Healthcare Transition documents and resources into the EMR

www.gottransition.org www.floridahats.org www.youth-move.org/transition-timeline Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home; American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group; Pediatrics 2011;128;182; originally published online June 27, 2011; DOI: 10.1542/peds.2011-0969 National Survey of Children with Special Health Care Needs, 2009/10

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