1. Transition To Adult Care Providers Laura Pickler, MD, MPH Assistant Professor Family Medicine and Pediatrics 11-16-09

2. First some definitions TransitionTransition –What everyone needs when they grow up –Happens multiple times throughout childhood and young adulthood and is a normal part of life –Involves knowing what you need, who to ask, and how to get it –For YSHCN this process must be intentional and well planned –Teamwork is key Transfer –What everyone eventually does when they grow up –Is a change from the providers who cared for them in childhood –Requires adequate insurance, transportation, availability of a provider and a degree of independence –For YSHCN this might happen multiple times if they have many pediatric providers

3. Why doesn’t this usually go well? The adult system is seen as being insensitive to family issues.The adult system is seen as being insensitive to family issues. Access to knowledgeable medical providers, especially mental health professionals, is extremely limited for adults.Access to knowledgeable medical providers, especially mental health professionals, is extremely limited for adults. Parent expectations are high for what they expect their medical providers to provide.Parent expectations are high for what they expect their medical providers to provide. Costs to provide medical care for YSHCN far outweighs reimbursement across all disciplines.Costs to provide medical care for YSHCN far outweighs reimbursement across all disciplines. Many physicians do not have the knowledge/training to care for this patient population well.Many physicians do not have the knowledge/training to care for this patient population well. Chronological age is seen as more of a marker for transition than developmental age.Chronological age is seen as more of a marker for transition than developmental age. Most physician groups feel that case coordinators are crucial to patient care. Specifically mentioned services include social work, financial counselors and referral coordinators. Most physicians do not have access to anyone trained in any of these disciplines.Most physician groups feel that case coordinators are crucial to patient care. Specifically mentioned services include social work, financial counselors and referral coordinators. Most physicians do not have access to anyone trained in any of these disciplines. Families have made good suggestions that are difficult to implement without significant funding for infrastructure and a global change in how health care is delivered.Families have made good suggestions that are difficult to implement without significant funding for infrastructure and a global change in how health care is delivered.

4. Practical Barriers from the Trenches All providers in a clinical setting really have to function as a teamAll providers in a clinical setting really have to function as a team Community resources need to be considered part of the team from day 1Community resources need to be considered part of the team from day 1 A case manager or social worker with an interest in this area is criticalA case manager or social worker with an interest in this area is critical Specialists must reach out to primary care providers as team membersSpecialists must reach out to primary care providers as team members Transition must be started years before adult skills are expected/neededTransition must be started years before adult skills are expected/needed Transfer to an adult provider cannot even be considered unless the patient is medically stableTransfer to an adult provider cannot even be considered unless the patient is medically stable

5. What we don’t need More studies showing barriersMore studies showing barriers More tools or forms to organize transfer of care or transition activities (unless there was a compelling reason to have a diagnosis specific tool)More tools or forms to organize transfer of care or transition activities (unless there was a compelling reason to have a diagnosis specific tool)

6. What we do need Demonstration projects that are funded to show what model not only works, but what is sustainable giving current billing practicesDemonstration projects that are funded to show what model not only works, but what is sustainable giving current billing practices Recognition that there probably isn’t one “right” way for everyoneRecognition that there probably isn’t one “right” way for everyone Recognition that community resources should be utilized and not try to duplicate these resources in a medical settingRecognition that community resources should be utilized and not try to duplicate these resources in a medical setting To put the needs of patients and families first in order to design a process that works for them, not to force them to fit into a process that is “the best we can do right now”To put the needs of patients and families first in order to design a process that works for them, not to force them to fit into a process that is “the best we can do right now”

7. Disclaimer This presentation is based largely on the literature, my research, and experiences. In the brief time we have today I wanted to give you an overview of the landscape. In my opinion transition should be a priority area of the NCC. If you agree, we should plan another time to discuss the issues in more depth, hear from young adults in the midst of this process and brainstorm our role as specialists.