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

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

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

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.

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

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

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 128:182-200, 2011

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 18-22 – 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

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 18-22 – 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

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

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

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

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

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

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

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

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

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

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.

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: 835-840, 2016. http://www.neurology.org/content/suppl/2016/07/27/WNL.0000000000002965.DC1.html

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.

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.

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 17-18 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.

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.

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

Additional Resources www.GotTransition.org www.childneurologyfoundation.org