In a recently released issue of Pediatrics(10.1542/peds.2019-3943), pediatrician Dr. Sheldon Berkowitz partners with parent Pat Lang in an engaging and informative Family Partnership article about transitioning young adults with highly complex medical needs from pediatric to adult providers. Ms. Lang’s daughter, a young woman with pediatric/infantile onset metachromatic leukodystrophy who has undergone two bone marrow transplants, is the index patient for their discussion. This “real world” article gives us a thoughtful look at the “the good, the bad and the ugly” of coordinating this transition to care by adult providers, and gives real food for thought.
I don’t think I had ever fully considered how this process feels to the parent, and this side is well articulated by parent Pat Lang. I now realize that the parents of those young adults and teenagers I have helped to transition to adult providers likely did not let me know how difficult and frankly traumatic this process was for them. No one has come back and said to me, “That was terrible! I felt abandoned!” Partly I suspect this is because it would be an awkward phone call or visit, but perhaps also there is a well of good feeling, and a relationship built over many years, that led the parent to sigh, and with grace and kindness, spare me the rough truth. Those parents who have returned with their young adult for an appointment 2-3 years later (after a plan we thought was in place fell apart) simply told me, “It’s not working.” And we begin the search for a reliable, competent, and willing adult provider again. This article has convinced me that anticipatory guidance regarding how the family may feel about changing an entire medical team, and about the potential fallibility of the process, should be a part of any transition plan, and will become part of mine.
Second, the authors provide a detailed and very helpful “Roadmap for Transitioning Adolescents from a Pediatric to an Adult Practice” that is definitely worth reviewing and potentially adopting. The Roadmap incorporates the recognition that not all young adults with special health care needs are alike, and modifies the plan by age and by complexity of medical problems. In my own practice, I am driven by a more concrete but similar categorization: does the teenager/young adult need a level of daily assistance that would make independent living infeasible? If so, I prioritize coaching for the parent to gain Guardianship through Probate Court before the legal age of adulthood; this has important ramifications for health insurance, care, and legal status. Second, I encourage parents to collaborate with their teen’s high school guidance counselor to postpone high school graduation (as is possible both legally and educationally) until a vocational plan is in place, since one can flow into the other more easily while the teen is still “in the system.” Finally, becoming (or remaining) connected with County services that include case management is a lynchpin for success, since as Dr. Berkowitz and Ms. Lang note, adult providers rarely have social work or ancillary services in their offices. If all of these administrative steps can be accomplished before any medical transitions are attempted, the process seems to run more smoothly. For those teens/young adults who will be able to live independently, medical planning can take the front seat from the start. An important “take home” for me from this terrific article is that each of us should create a similar document or modify this one for our own practice. Thank you to Ms. Lang and Dr. Berkowitz for sharing their collaboration.
