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Transition of the Medically Complex: Tips for Success

January 19, 2022

Tori Bahr, MD, FAAP

Healthcare transition is the purposeful process of building skills to successfully navigate the adult system of care and the development of an adult healthcare team that can provide ongoing medical care long-term. Although there are incredible resources to implement in your clinic (ie. GotTransition.org), the needs of our most medically complex patients are not fully met by these programs. As more medically complex children age out of pediatric care we all must learn to do this work more effectively and safely. Reflecting on building my transition focused complex care practice, I have created a basic framework pediatricians can use to initiate transition for these most vulnerable. 

First, identify your comfort level with caring for complex patients as they age. Often this is thought of as a specific age, yet the 2017 AAP Policy Statement on Age Limits discourages arbitrary age limits on pediatric care. Instead, they recommend considering “the physical and psychosocial needs of the patient and the abilities of the pediatric provider to meet these needs.” Most importantly, once your cutoff is decided, develop a plan to communicate this to families – on the website, discharge paperwork, conversations, etc.   

The AAP and other professional organizations recommend starting transition conversations between 12 to 14 years of age. Around this age, my focus is on maximizing independence and understanding abilities. This may involve evaluation by neuropsychology to ensure IEP is maximized, speech therapy to explore communication devices, and identifying the patient and family’s understanding of their disease.

As patients edge closer to 16 years old, I create a table that includes each of their providers by specialty. In one column is the pediatric provider with their cutoff for care and the next is the adult / transition plan column. This visualization can guide the order of transfers and be a tool for patients to take along to other appointments, enhancing communication and relieving families of the burden of initiating this conversation.

Developing a new care team will take years. This process can be very traumatizing for patients and their families. Trauma, grief, and depression are common, screen patients and their families and refer to mental health care as indicated.

It is hard to say goodbye to patients and families — we’ve watched them grow, overcome obstacles, and thrive. When done well, transition can be incredibly rewarding. It is a way to visualize your hard work improving the lives of children and their families.

Although there are countless opportunities to implement today, systemic barriers exist that prevent the provision of safe, equitable and effective transition care. As such, a Transition Roundtable championed by the Chloe Barnes Advisory Council on Rare Diseases will take place in 2022 to advocate for structural change. This work requires creativity, innovation, and thoughtful pediatricians. I welcome your ideas and involvement to fundamentally change healthcare transition in Minnesota. 

Interested in learning more about the Chloe Barnes Advisory Council on Rare Diseases? 

Visit cbacraredisease.org for details about the council’s function, members, and upcoming meetings. 

About the Author

Tori Bahr, MD, is an Internal Medicine-Pediatric Complex Care Doctor at Gillette Children’s Specialty Healthcare. She is passionate about radically changing the care of children and young adults with complex medical conditions from childhood as they transition from pediatric to adult care.  

 

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