Emerging Adulthood:Facilitating the Transition to Adult-Centered Medical Care

Kitty O’Hare, MD

Internal Medicine-Pediatrics Residency ProgramBrigham & Women’s Hospital/Boston Children’s Hospital

Optimizing Transition

Kitty O’Hare, MD

Disclosure of Financial Relationships

I have no relationships with any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients.

Case: Maria

• 17-year-old with cerebral palsy, epilepsy, & learning disabilities

• Continues to see her 8 pediatric specialists

• Has not seen her primary care doctor in 3 years

• Does not know the names of her medications or how to take them

When Should Maria’s Transition to Adulthood Start?

AAP, AAFP, and ACP advise active planning by age 12-14 years

AAP, AAFP, ACP-ASIM. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110 S3: 1304-6

Definition of Adult Transition

“The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”

-Society for Adolescent Medicine

SAM. Transition to Adult Health Care for Adolescents and Young Adults With Chronic Conditions. J Adol Health 2003;33:309-11.

Transition

transfer

Should we be transitioning everyone?

“Adults, including those with childhood-acquired chronic conditions, should receive adult-oriented primary health care from appropriately trained and certified providers, in adult health care settings.”

-Society for Adolescent Medicine

Transition Will Help Maria to Build Resilience

• Self-perception as not handicapped

• Involvement in household chores

• Disabled & non-disabled friends

• Family and Peer Support

• Parental Support without over-protectiveness

White, Patience. Transition: a future promise for children and adolescents with special

health care needs and disabilities. Rheum Dis Clin North Amer. 2002; Vol 26. No 3.

Rimmer, J. A., Wang, E., Yamaki, K., & Davis, B. (2009). Documenting disparities in obesity and disability. FOCUS Technical Brief (24). Austin, TX: SEDL.

State-Level Variability in Transition Outcome National Survey of CSHCN 2009-2010

Kansas Utah

Montana

Nebras

ka

Minnesota

Massach

usetts

Connecticu

t

Alaska

Virginia

Indiana

Rhode Isla

nd

Colorado

Tenness

ee

West

Virginia

South Caro

lina

Missouri

New Yo

rk

Delaware

Hawaii

Florid

a

New M

exico Ohio

Texa

s

Georgi

a

Louisia

na

Nevad

a0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

% Successfully Achieving Transition Outcome

www.childhealthdata.org

Series10%

10%20%30%40%50%60%70%80%90%

100%

44%

59%

35%

78%

40%

HCP Discussed Shift to Adult ProviderHCP Discussed Adult Health Care Needs Anyone Discussed Health in-suranceHCP Usually/Always Encourages Youth to Take ResponsibilityOverall Core Outcome

Are We Providing Transition Services? Parental Viewpoint

McManus MA et al. Pediatrics 2013; 131:1090-1097

0%

10%

20%

30%

40%

50%

60%

70%

How healthneeds may

change

Healthinsurancecoverage

Health relatedtransitionservices

SchoolTransition Plan

Received 3TransitionServices

D

53% 55%

34%

62%

24%

Sawicki GS, et al. Receipt of health Care Transition Counseling in the National Survey of Adult Transition and Health. Pediatrics 2011; 128(3): e521-e529.

Are We Providing Transition Services? Youth Viewpoint

2009/10 National Survey of Children with Special Health Care NeedsMCHB Core Outcomes and Key Indicators; www.childhealthdata.org

Barriers for Maria and her FamilySystem-Based

• Difficulty finding providers to accept care

• De-centralization of care• Lack of communication

between adult medicine & pediatrics

• Challenges with SSI, Medicaid

Patient Knowledge• Overall maturity• Ability to participate in care

Resistance to Change• Familiarity with the

pediatrician• Need to maintain control/

Perception adolescent cannot handle condition

Reiss JG, et al. Health Care Transition: Youth, Family, and Provider Perspectives. Pediatrics 2005;115;112.

Not Covered

SomewhatCoveredWell Covered

Adolescent Medicine Training in Pediatric Residency Programs

Chronic Illness

Not Covered

SomewhatCoveredWell Covered

Handoffs to Adult Care

14% 17%

50%

33%

49%

37%

Fox HB, et al. Adolescent Medicine Training in Pediatric Residency Programs. Pediatrics 2010; 125:165-72.

Likelihood to Provide Care after Residency

Patel MS and O’Hare K. Residency Training in Transition of Youth with Childhood-Onset Chronic Disease. Pediatrics 2010; 126 S3:S190-3.

1 Transition Policy Posted Staff /Family/CY Informed

4

Transition Planning Health Care Transition Plan Portable Medical Summary

2 Transitioning Youth Registry Identify: 12-17, 18-21, 22-26

5 Transition & Transfer of Care Transfer Checklist, EMR Summary Med. Record

3 Transition Preparation Teach & Track Skills

6 Transition Completion 3 months post/followup

Six Core Elements of Health Care Transition

1. Maria is informed of her provider’s Transition Policy

“At Pediatric Physiatry Associates, we provide age-appropriate care for children and adolescents. By age 14 years, we encourage our patients to spend some time alone with their

provider. By age 22 years, our patients will transfer to an adult

facility.”

2. Maria is entered into her physiatrist’s Transition Registry

3. Maria’s Transition Readiness is assessed at least once per year

Transition Readiness Assessment Questionnaire (TRAQ)

4. You assist Maria with Transition Planning

Medical Educational Vocational

Independent Living/ Home

CareGuardianship Insurance/ SSI

Financial Planning

Advanced Directives

Relationships/ Sexuality

5. You assist Maria with Transfer of Care

Complete records

Portable Summary

Direct Communication

6. You invite Maria to participate in Transfer Completion

•Focus Groups

•Youth/Family Advisory Board

•Transition Feedback Survey

Maria Transitions Successfully!1. Informed of your office transition policy

2. Entered in your high risk registry

3. Assessed for transition readiness

4. Participated in drafting an action plan

5. Worked with you to identify adult providers and transfer information

6. Graduated to adult care

Questions?

Kitty O’Hare, MDDirector of Transition Medicine for Primary Care,Weitzman Family BRiDGEs Young Adult Program,

Boston Children’s HospitalFrances.ohare@childrens.harvard.edu

Transitions in PM&R Practice:Beginning Adult Physiatric Care

Jason Frankel MDInstructor / Staff Physiatrist

Spaulding Rehabilitation Hospital

Disclosures

I have no financial disclosures

Challenges for Adult Physiatrists

• It takes time to efficiently communicate and assimilate past history and procedures.

• There is no special time to communicate with other practitioners.

• It takes time to communicate what adult care can do for a patient.- Expectations do not always match!

Challenges for Patients

• Patients and caregivers are not always sure how to communicate to adult practitioners about the import of special needs.

• There is a knowledge gap amongst some adult practitioners.

• Patients sometimes unprepared for differences in how care is delivered.

Challenges for Communities

• Many communities lack capacity and information to help, incorporate and educate patients and caregivers.– Things really change when school is over!

• What is the ideal formula to combine the tools we have and continue to develop?– Research needed!

Two Examples

• Patient 1 is a 20 year old male with spastic diplegia, who has been maintained with phenol and botulinum injections for many years by a pediatric colleague.– Injections have always been done under general anesthesia.

• Patient 2 is a 24 year old female with spastic diplegia, who presents with gradually worsening cervical and low back pain since her late teenage years.– Her former pediatric physicians feel adult physiatry will have more

to offer. They send all her clinic and surgical records.

The “CHB to SRH” Model

• Potential candidates for transition to adult care are identified in mid-adolescence.– Our general consensus in joint meetings has been to begin

discussion of the transition years in advance.

• CHB clinic coordination staff communicate with counterparts at SRH.– Info is transferred, including primary care, surgical specialty,

physiatry and procedure notes.– Insurance pre-auth is obtained.

• An initial appointment is set.

The First Meeting

• This is never a procedural visit.– Frequently, the patient will have just had botulinum or phenol

injections with Dr. Nimec or Quinn.– Some patients do not require frequent procedures but will

have ongoing equipment and mobility needs.

• I gain a general sense of the nature and causes of the condition, and other health concerns.– I also try to tune in on activities that are painful or pose the

greatest difficulty to accustom patients to talk about these uncomfortable issues.

• I perform my own exam and determine what plan of care I think makes sense.

Planning for Future Appointments

• I then go back to see if my impressions gel with care others have provided in the past.– Do prior botulinum/phenol injections look similar, and how

frequently were they performed? Has care mostly been to maintain equipment? Are there likely to be ongoing therapy needs?

• If procedures are needed, I exhaustively describe how the injections are done without general anesthesia and answer questions.– We discuss how procedures may be subtly altered for greater

comfort.

• If no procedures, we determine what follow up interval makes sense.– Depends upon equipment needs, therapies prescribed and

progress.

Psychosocial Considerations Impacting Transition from Pediatric to Adult Medical Care

Elena Daha-Slavkova, LCSW

October 3, 2015

Disclosures

I have no financial disclosures.

Consensus Statements

“The goal of transition in health care for young adults with special health care needs is to maximize lifelong functioning andpotential through the provision of high-quality, developmentallyappropriate health care services that continue uninterrupted as

the individual moves from adolescence to adulthood. Itscornerstones are flexibility, responsiveness, continuity,

comprehensiveness, and coordination.”

  - AAP Consensus Statement

“Health care transition is the process of changing from a pediatric to an adult model of health care. The goal is to Optimize health and assist youth in reaching their full potential. To achieve this goal requires an organized transition process …..without disruption in care.”

---GotTransition.org

Transition is a Process, Not an Event

Transition is a process Transition begins at birth/point of diagnosis. Planning should begin as early as possible on

a flexible schedule recognizing the youth’s increasing independence and capacity to make choices (White, et al).

Developmental Framework

Developmental framework considers: Childhood development/expectations Development process of coping with illness

(length of time since diagnosis) Family (especially parents) development and

willingness to allow autonomy

Resource Facilitation

Identify concrete needs in advance. Financial and estate planning to begin in very early

childhood; educational, vocational and guardianship planning in early adolescence using Medical Home model to coordinate care. (Cooley, et al).

Assess readiness of the patient and family to engage in this process and address any areas that might present a challenge. Transition happens over a span of time during which

the patient and family become familiar and comfortable with the community resources.

Resource Categories

State/Federal Entitlement Programs Early Intervention, SSDI, Housing

Financial/Insurance SSI, SSDI, MassHealth/CommonHealth,

private insurance Education/Work

IEP, 504,688 Referral, MassRehab, college Legal

Guardianship/conservatorship, advanced directive

Guardianship

By law, all persons 18 years old and older and presumed competent (are able to make decisions about health care, finances and other important areas of life) and provide informed consent.

If unable to provide informed consent, several options should be considered IN ADVANCE of the 18th birthday.

Guardianship and Alternatives

Guardianship/Conservatorship Limited Guardianship Temporary Guardian or Conservator Durable Power of Attorney Advanced Directives/Health Care Proxies Trust

Guardianship Process

Obtaining guardianship has 2 basic parts: Evaluation of person’s capabilities and

limitations, completed by one or more licensed professionals.

Clinical Team Report Court petition to local probate court.

Patient/Provider Relationships

These crucial relationships drive the developmental process of transitioning forward.

Several areas to consider: Self Awareness Cultural Sensitivity Systems Issues Empowerment Termination

Self Awareness

Providers’ reluctance to “let-go” of pediatric patients for whom they have provided care for years.

Patients/Families reluctance to leave supportive, trusted relationships to face unknown.

Awareness of ambivalence by providers, patients and families. So called resistance of adolescents and parents to

move in the adult field is often more derived from the professionals’ attitudes than the one of the patient and his family. Thus, the paediatric teams should reflect on issues such as their own grieving processes and they should develop specific strategies to overcome barriers to adequate transition. (Michaud, Suris, Viner, 2004)

Cultural Sensitivity

Cultural shift from pediatric, family centered care to adult, patient driven and problem oriented care. Important transitions for adolescents with CP include

the transition from child-centered pediatric to adult-oriented healthcare, the transition from school to work, and the transition from home to community (Liptak, 2008).

Diversity has broad meaning, including socio-cultural experiences of people of different genders, social classes, religious and spiritual beliefs, sexual orientations, ages, and physical and mental abilities.

Systems Issues

Micro and Macro level systems are involved. Within clinic, broader hospital. Community agencies, including school.

Navigation of multiple complex systems often requires guidance, support or direct advocacy.

Empowerment

Fostering independence of patients and families is the foundation of the transition process. Concrete tasks that involve navigating a

complicated health care system. Development of self-advocacy efforts during

treatment planning in collaboration with health care collaterals.

Termination

Healthy termination practices and theories are crucial to the transition process: Ultimate transfer of care, and the anticipation

of it, may invoke feelings of abandonment and grief for a patient and family.

Possibly re-traumatizing, if the loss of the pediatric provider is experienced as significant a loss as the initial medical diagnosis.

All important relationships are affected by the dynamics of the attachment process. (Shanske, et al, 2012).

Transitioning

Transitioning from pediatric to adult care must be seen in a developmental framework, as a process not a moment in time.

This process occurs through the relationships with providers. Providers must be mindful of this dynamic and

aware of their role in facilitating the transition process.

Bibliography American Academy of Pediatrics, American Academy of Family

Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transition for young adults with special health care needs. Pediatrics. 2002; 110,1304-6.

Cooley WC. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics. 2004;114(4):1106-1113.

GotTransition.org Liptak, GS. Health and well being of adults with cerebral palsy. Current

Opinion in Neurology. 2008; 21: 136-142. Michaud P, Suris J, Viner R. The adolescent with a chronic condition.

Part II: healthcare provision. Archives of Disease in Childhood. 2004;89(10):943-949.

Shanske, S. Arnold, J. Carvalho, M. & Rein, J. (2012): Social Workers as Transition Brokers: Facilitating the Transition From Pediatric to Adult Medical Care, Social Work in Health Care, 51:4, 279-295.

White, P. & Hackett, P. On the threshold to the adult Medical Home: Care coordination in transition. Pediatric Annals. 2009; 38(9): 513-520

Beyond Boston:Navigating Transition in

Different Practice Environments

Jennifer Miller MDAssistant Professor

Physical Medicine and RehabilitationAlbany Medical Center

Transition

Transition means moving from one place or stage of life to another. For youth:• from school to work or education after HS• from a family home to community living• from child-oriented health care to adult care

Transition

Transition means moving from one place or stage of life to another. For youth:• from school to work or education after HS• from a family home to community living• from child-oriented health care to adult care

This looks different in varying educational, living, and health care environments!

Resources

• Each state is required by law to seek out and evaluate all children with disabilities from birth to age 21

• Child Find is the government-supported program (mandate under Individuals with Disabilities Education Act of 1975). All states have a Child Find agency. Parents can request the assessment or medical professionals can make a referral.

• After identifying children who may need services, all necessary evaluations must be completed on these children, at no cost to parents

From school…

• AAP recommends discussion on transition begin by age 14 years when IEP postsecondary transition planning begins

• At age 17, the student must be informed in writing that, upon turning 18 he or she will have the right to make IEP decisions, unless a parent has obtained guardianship.

• The Rehabilitation Act of 1973, which, in part, prohibits discrimination against college tuition funding for people with disabilities broadened opportunities for training and secondary education.

• Decisions regarding services in the home vs day programs vs residential options

From home…

From home…

• Services available through Medicaid but with challenges:

– There is no guarantee of eligibility, acceptance, or placement

– There are wait lists for services

– Planned services and available services may differ

From pediatrics…

• Practice environment

• Coordination of care

Primary Care

• The physiatrist may be one of many specialist a patient with cerebral palsy sees every year

• Possible primary care lost along the way• Encourage importance of primary care

– Coordinate complex needs– Oversee of healthcare maintenance – Provide referrals as needed

Online Resources

• http://cerebralpalsy.org/the-journey/transition/• www.disability.gov• www.parentcenterhub.org• http://www.gottransition.org/

Considerations for the “General” Physiatrist

• Ask about educational / vocational transition• Support residential transition and shifting needs

for service and equipment prescription• Focus on patient autonomy and self advocacy• Incorporate adult-oriented review of systems

including sexual health and intimacy• “Reorientation of clinical interactions to mirror

the young person’s increasing maturity and emerging adulthood”

Resource for Adult PM&R

Considerations for Adult PM&R:• Ask the pediatric provider to send you information about the youth’s specific childhood

onset/congenital conditions associated with the patient’s intellectual disability, including any existing preventive care guidelines for such conditions.

• Ascertain shared decision-making status and implications (guardianship, powers of attorney, and consent to share personal health information).

• Ascertain the young adult’s ability to communicate and communication method if other than verbal speech, and identify use of any other assistive technology, including mobility devices.

• Treat the patient as an adult regardless of level of intellectual disability – greet the patient first, speak and direct questions to the patient even if a caregiver provides responses. Encourage the highest level of involvement of the patient in his or her care.

• Consider a follow-up telephone call from a clinical office staff member to review plan of care, medications, and procedures for accessing the office.

Starting a Transition Program

1. Preparation2. Flexible timing3. Coordination of care4. Transition clinic visits5. Health care providers interested in taking care of adults with disabilities

Medical Records

Create a list of the most important documents to bring in transition

– Updated medication list (with recent changes)– Botox treatments or baclofen pump adjustments– Summary of equipment – Inpatient discharge summaries– Surgical reports– Advanced imaging

Billing Considerations

References• http://cerebralpalsy.org/information/education/transitions/#more-64• http://www.parentcenterhub.org/repository/comp-approach-to-transition/• http://cerebralpalsy.org/the-journey/transition/• www.disability.gov• www.parentcenterhub.org• https://www.wildwood.edu/index.php/Transition/transition-services-

overview• Sawin, K.J., Rauen, K., Bartelt, T. et al. Transitioning adolescents and young

adults with spina bifida to adult healthcare: initial findings from a Model Program. Rehabil Nurs. 2014; 17: 1–9

• American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, and American Society of Internal Medicine. A Consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110: 1304–1306

Thank you

Case Discussion