1. Improving Health Care Transition: The Neurologist’s Role (with an emphasis on Tuberous Sclerosis)
Lawrence W. Brown, MD
Pediatric Neuropsychiatry Program
The Children’s Hospital of Philadelphia
March 2, 2017

2. Disclosures
Co-Investigator: Pediatric epilepsy and transition grant funded by HRSA (Health Services Resources Administration)
If you have any disclosures, please list them here. If you have no disclosures, it’s fine to simply include a sentence such as: “I have nothing to disclose.”
For internal use only

3. Why talk about Transition?
Adulthood is inevitable
Pediatric clinicians are not adult specialists
Youths with neurological and intellectual disabilities also have medical issues that are best managed by adult physicians
Despite awareness of these imperatives, child neurologists often unfamiliar with, unwilling to, or unable to successfully transition patients to adult providers
For internal use only

4. The Big Picture 1 in 6 U.S. children live with neurologic disease
18 million young adults will be moving into adult healthcare system in 2017
Only 40% of youth report (or per caregiver report) discussing transition with a healthcare providers
One third or more of children with epilepsy will continue to have seizures through adulthood and ˜20% never have a period of remission.
70% - 80% of children with epilepsy have cognitive, behavioral, or psychological comorbidities.

5. What do we mean by (Medical) Transition?
The process beginning in early adolescence to prepare children with chronic illness and their families for adult care
Transition must be distinguished from transfer - the formal act of handing over care from pediatric to adult health system

6. Barriers to Successful Transition: Both Generic and Specific to Neurology
Patients, family and providers unwilling to transition
Young adults do not always understand medical systems (e.g. higher rates of non-adherence)
Patients/families uncomfortable with differences in pediatric vs adult culture
Adult providers uncomfortable and/or lack experience with many neurologic diagnoses
Absence of reimbursement for transition care

7. Context of the CNF Effort
2011 report by the American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians
Consensus statement addressed role of primary care providers in health care transition
Provided practical guidance on how to plan and implement better health care transitions for all patients
Integrated transition planning into medical home care with ongoing chronic care management
Called for specialist providers to outline same detailed guidance
Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128: , 2011

8. 6 Core Elements of Health Care Transition from 2011 AAP/AAFP/ACP Clinical Report
Transition policy
Tracking and monitoring
Transition readiness
Transition planning
Age 12 – Youth and family aware of practice’s health care transition and transfer policy
Age 14 – Health care transition planning initiated
Age 16 – Preparation of youth and parents for adult approach to care and discussion of preferences and timing for transfer to adult health care
Age 18 – Transition to adult approach to care even if remain in pediatric setting or with family medicine/med-peds provider, addressing privacy and guardianship
Age – Transfer of care to adult medical home and specialists with self-care skill assessment and plan of care, updated medical summary and emergency care plan, and, if needed, decision-making documents and condition fact sheet
Transfer of care
Transfer completion

9. Transition Timeline from 2011 AAP/AAFP/ACP Clinical Report
Age 12
Youth and family aware of transition policy
Age 14
Health care transition planning initiated
Age 16
Preparation of youth and parents for adult approach to care and discussion of preferences and timing for transfer to adult health care
Age 18
Transition to adult approach to care
Age 12 – Youth and family aware of practice’s health care transition and transfer policy
Age 14 – Health care transition planning initiated
Age 16 – Preparation of youth and parents for adult approach to care and discussion of preferences and timing for transfer to adult health care
Age 18 – Transition to adult approach to care even if remain in pediatric setting or with family medicine/med-peds provider, addressing privacy and guardianship
Age – Transfer of care to adult medical home and specialists with self-care skill assessment and plan of care, updated medical summary and emergency care plan, and, if needed, decision-making documents and condition fact sheet
Age
18-22
Transfer of care to adult medical home and specialists with transfer package

10. For internal ue only
Child neurology Child neurology nurse Adult neurology Primary care (pediatrics, med-peds) Allied professionals Patients Families

11. Methodology Interdisciplinary team representing major stakeholders
Consensus based on literature review and expert opinion
Development of common principles and vignettes to show generalizability across diverse conditions
Peer review
Final guideline

12. For internal ue only
CNF
Child neurology Child neurology nurse Adult neurology Primary care (pediatrics, med-peds) Allied professionals Patients Families
CNS
AAN
AAP
AES

13. Principles of Good Transition
1. Expectation of transition
Time for patients and families to prepare for eventual need to transfer to adult care
Time to gradually increase competency in disease knowledge, self-management, advocacy
Time to learn about differences in adult care models and health insurance
Time to coordinate with school transition under IDEA
For internal use only

14. Principles of Good Transition
2. Yearly self-management assessment
3. Annual discussion of medical condition and age- appropriate concerns
Separate appointment vs part of non-acute visit
Age-specific concerns including issues of puberty, disease knowledge, risk taking behaviors
For internal use only

15. Principles of Good Transition
4. Evaluation of legal competency
Legal consultation if child unlikely to achieve independent financial/medical decision making
5. Annual review of transition plan
Assurance that appropriate plan exists
6. Child neurology team responsibilities
Assessment of disease knowledge and self-management skills; guardianship planning for those with significant intellectual or physical disabilities
Preparation of transition packet
For internal use only

16. Medical Transfer Packet:
Documentation of diagnosis/etiology
Previous treatments/ drug trials and diagnostic evaluations
Significant past procedures
Current medications and laboratory results
Protocol for emergency care
For internal use only

17. Principles of Good Transition
7. Identification of adult provider
Neurologists may be willing to treat primary neurologic problems but not co-morbidities
Some conditions are not generally managed by adult neurologists (i.e. ADHD, autism, Tourette syndrome)
Importance of medical home – Consider med-peds for complex or challenging patients
Flexible time of transfer - High school graduation, pregnancy or independent living, college graduation
8. Transfer complete when provider accepts patient and appointment made and kept
For internal use only

18. Practical Considerations to Remember Throughout Transition Period
Importance of an office transition policy
Promote transition readiness by gradually making adolescent responsible for self-management
Make time for someone to discuss transition readiness annually
Do not become defensive if families rebel against discussion of guardianship

19. Practical Considerations to Remember As Transfer Approaches
Flexible time of transfer
High school graduation, pregnancy or independent living, college graduation
Consider adult providers at least one year before expected transfer
Importance of medical home – consider med-peds for complex or challenging patients
Develop local resource directory
The child neurology team remains responsible for continuation of care until transfer completed.

20. Vignettes: Guiding Principles in Action
General neurology: Juvenile myoclonic epilepsy
Cognitive impairment: Fragile X syndrome
Motor impairment: Duchenne muscular dystrophy
Neuropsychiatric: ADHD
Complex: Tuberous sclerosis
Brown LW et al. The neurologist’s role in supporting transition to adult health care: a consensus statement. Neurology 87: , 2016.

21. Case study
Patient is a 12-year-old female with TSC followed by a child neurologist, nephrologist and other subspecialists at an academic center. She attends a special education (life skills) program where she is able to follow simple commands and communicate with a few words supplemented by gestures. She ambulates and feeds herself but otherwise needs assistance in activities of daily living. Her mother is the primary caregiver with some assistance from her stepfather; they do not receive any nursing or community services.

22. Applying the common principles
1. Setting expectations/starting early: the child neurologist initiates a transition discussion with her mother at; together they decide that transfer of care will occur around 18. A brochure outlining the neurology office’s transition policy and offering contact information for questions is provided to the mother.
2-3. Continuous self-assessment: Over the next several years, transition issues are reviewed and addressed at scheduled office visits. Guardianship is discussed at age 14, given severe intellectual disability and limited self-management skills. These discussions are documented in the medical record.
4. Legal competency: Upon review of the transition plan at age 15, the mother indicates she has initiated discussion of transition with some but not all health care providers. She is encouraged to continue working on this issue; and by the next year at age 16, the subject has been raised with all providers.

23. Applying the common principles
5. Comprehensive needs: A member of the neurology team reviews school testing and IEP. The mother states that the family wants her to live at home for the foreseeable future but inquires about the possibility of a group home in the future. Contact information for community resources is provided. The mother is also informed that she will need to recertify for Medicaid by adult criteria at the state’s required age.
6. Transfer Packet: At age years, the child neurologist outlines the neurological history, including all current medications, previous antiepileptic drug regimens and why they failed, procedures, and relevant diagnostic studies. She communicates with the PCP, who requests that the neurology team coordinate the transition process. The child neurologist assembles a unified shared medical summary and care plan, shares the first draft of this transfer packet with other providers, and confirms that transition planning for all subspecialty areas is in process.

24. Applying the common principles
7. Identifying Adult Provider: The child neurologist helps to determine legal competency by completing state-specific forms while the neurology social worker identifies an adult neurologist and prepares parents for a court hearing regarding guardianship. A court hearing is held soon after she turns 18, and her mother is named legal guardian.
8. Transfer: At the next office visit at age 19, the child neurologist confirms that that there is a scheduled appointment with an adult neurologist. The mother’s knowledge about TSC, medications, and seizure care are confirmed, and the child neurologist emphasizes that the family is welcome to contact the office if further questions arise. The transfer packet sent to the accepting adult clinicians and a copy is provided to the family. After this final visit, a member of the child neurologist’s team confirms receipt of the transfer packet by the adult provider’s office.

25. The Next Steps for TPAC: Putting Transition into Practice
Promotion of transition policy
Self Assessment
TRAQ (Transition Readiness Assessment Questionnaire)
Separate form for individuals with intellectual disability
Transition summary
Transition letter
Incorporation of transition materials into EMR

26. Additional Resources www.GotTransition.org