1. EXPECTING TO TRANSITION: REFRAMING THE JOURNEY AMY BRIN MILLER, MSN, MA, PCNS-BC, ACHPN EXECUTIVE DIRECTOR CHILD NEUROLOGY FOUNDATION WWW.CHILDNEUROLOGYFOUNDATION.ORG

2. CNF’S TRANSITION INITIATIVE IS CO-SPONSORED WITH EISAI. DISCLOSU RES

3. EVERYONE IS MY TEACHER. SOME I SEEK. SOME I ATTRACT BECAUSE OF WHAT I MUST LEARN. YOU MIGHT BE UNAWARE OF WHAT YOU TEACH ME. I BOW DEEPLY TO YOU IN MY GRATITUDE FOR WHAT YOU HAVE TAUGHT ME. NEESHIA JASMARA

4. WHAT I HOPE OUR CONVERSATION TODAY WILL GIVE YOU:  Have a working understanding of the term medical transition  Be aware of the CNF’s Transition Initiative, and how it may be of help to you  Begin to understand your role in expecting your loved one deserves a successful transition  Identify strategies to help you begin to establish your expectations related to medical transition

5. LET’S LAY THE GROUNDWORK.

6. UNDERSTANDING THE VOCABULARY.  Medical transition: The expected process (beginning in early adolescence) to prepare children to receive care within the adult system. **Includes caregivers.  Social transition: The expected process (beginning in early adolescence) to prepare children to live as independently as able. **Includes caregivers.  Transfer: The defined act of one provider handing over care to another provider (i.e. intensivist to pediatrician, child neurologist to adult neurologist).

7. DECLINE IN HEALTH DURING TRANSITION Renal transplant loss Andreoni et al. 2013 Sickle cell disease complications Blinder et al. 2013 Increasing obesity Lee et al. 2011 DECLINE IN HEALTH CARE DURING TRANSITION Worsened adherence Annunziato et al. 2007 Decreased follow-up Devernay et al. 2009 Lapses in insurance coverage Goudie et al. 2011 UNDERSTANDING THE SIGNIFICANCE.

8. UNDERSTANDING THE NUMBERS.  1 in 6 U.S. children live with neurologic disease  18 million; 18-21 yo in U.S. will be moving into adult healthcare system in 2013  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. Beghi, Camfield, & Camfield; 2014

9. UNDERSTANDING BARRIERS.  Patients, parents/caregivers unwilling to transition  Adult providers lack experience  Adult providers difficult to access  Difference in pediatric vs adult culture  Aging out, but still youth is unready/ unwilling to take adult responsibility  Insurance changes  Transportation/ Access  Patient seen by multiple providers without a medical home (fragmentation of care)  No time to discuss transition

10. UNDERSTANDING TRANSITION CONSIDERATIONS: TUBEROUS SCLEROSIS COMPLEX  Intellectual disability  Intractable epilepsy  Complex co-morbidity needs

11. UNDERSTANDING PROVIDER PAST RESPONSE. American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians = Primary care providers Consensus statement provides EXPECTATIONS of primary care providers role in health care transitions  Practical, detailed guidance on how to plan and implement better health care transitions for all patients (algorithm)  Integrating transition planning into medical home care with ongoing chronic care management  Called for specialist providers to outline same detailed guidance American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group Pediatrics 2011;128:182-200.

12. A Health care transition-planning algorithm for all youth and young adults within a medical home interaction ©2011 by American Academy of Pediatrics

13. REMEMBER THE CALL TO SPECIALTY COMMUNITY? NEUROLOGY WILL BE THE FIRST TO FORMALLY RESPOND.

14. NEUROLOGY COMMUNITY RESPONSE.  “The Neurologist’s Role in Supporting Transition to Adult Health Care: A consensus statement.” ( pending publication)  Endorsed by Child Neurology Society, American Academy of Neurology, American Academy of Pediatrics  Author panel: child and adult neurologists, med/ped physician, nurse, occupational therapist, patient, caregiver, and medical informatician  Content:  8 Common Principles  5 disease-specific vignettes illustrating Core Principles implementation; TSC is highlighted in single vignette

15. UNDERSTANDING HOW THE COMMON PRINCIPLES APPLY TO LGS PATIENT & CAREGIVER.

16. CASE STUDY Maddy is a 12-year-old female with TSC. She is followed by a child neurologist, nephrologist and other subspecialists at an academic center. Maddy attends a special education (life skills) school program; she is able to follow simple commands and communicates 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.

17. APPLYING THE COMMON PRINCIPLES 1. Setting expectations | starting early: Maddy’s child neurologist initiates a discussion of transition of care with her mother when she is 13 years old; together they decide that transfer of care will occur after Maddy’s 18 th birthday. 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 by a member of the child neurology team during scheduled office visits. Given Maddy’s severe intellectual disability, self- management skills are quite limited. At age 14, the family first hears about the legal need to establish guardianship by the time Maddy is 18, as she is not expected to be able to manage her needs independently. These discussions are documented in the medical record. 4. Legal competency: At a regular review of the transition plan when Maddy is age 15, the mother indicates she has initiated the discussion of transition of care with some but not all of Maddy’s health care providers. She is encouraged to continue working on this issue; and by the next year, when Maddy is 16 years old, her mother has discussed transition of care with all providers and understands how they will assist in finding adult providers for Maddy.

18. APPLYING THE COMMON PRINCIPLES 5. Comprehensive needs: A member of the neurology team reviews recent school testing and her individualized educational plan (IEP), which will allow her to remain in school until she is 21 years of age. The mother states that the family wishes to care for Maddy at home for the foreseeable future but inquires about the possibility of a group home as Maddy becomes an adult and her parents age. Contact information for community resources is provided. The mother is also informed that Maddy will need to recertify for Medicaid by adult criteria at the state’s required age. 6. Transfer Packet: Between ages 17 and 18 years, the child neurologist outlines the neurological history, including all current medications, previous antiepileptic drug regimens and why they failed, procedure dates, and relevant diagnostic studies. The child neurologist communicates with Maddy’s pediatrician, 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 Maddy’s other providers, and confirms that transition planning is ongoing in all subspecialty areas.

19. APPLYING THE COMMON PRINCIPLES 7. Identifying Adult Provider: Meanwhile, a member of the child neurology team looks for an adult neurologist in the area. In addition, preparation for a court hearing regarding guardianship is underway. In order to assist the judge on determining legal competency, the child neurologist completes state-specific forms in conjunction with a licensed social worker and psychologist. A court hearing is held when Maddy is 18 1/2 years old, and her mother is named legal guardian. 8. Transfer: At the next office visit, at age 19, the child neurologist confirms that an accepting adult neurologist has been located, and Maddy has a scheduled appointment. 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. A copy of the transfer packet is provided to the family, and another one is sent to the accepting adult clinicians. After this last visit, a member of the child neurologist’s team confirms receipt of Maddy’s transfer packet by the adult provider’s office.

20. ON TUESDAY - SET YOUR EXPECTATIONS!  Get informed:  www.gottransitions.org www.gottransitions.org  www.medicalhomeinfo.org www.medicalhomeinfo.org  http://www.childneurologyfoundation.org/patients-or-caregivers/transition-into- adulthood/ http://www.childneurologyfoundation.org/patients-or-caregivers/transition-into- adulthood/  Begin dialogue with self, family, and youth regarding transition expectations (health care v. social)  Begin dialogue with your provider regarding transition expectations  Reach out to your community – YOU ARE NOT ALONE!

22. WE ARE HERE SO YOU NEVER HAVE TO WALK ALONE. AMILLER @ CHILDNEUROLOGYFOUNDATION. ORG