Transition: Pediatric to Adult Care
When your child gets to “that age” where you and your physician, PA, clinic nurse, and child start talking about transitioning from pediatric care to adult care, there are several things to talk about and decisions to make.
Our daughter Chloe is now 24, and the transition from pediatrics to adult care started around age 19. Our pediatrician (to whom we are eternally grateful and think is the best!!) opened the discussion with our daughter and us, with the suggestion to start thinking about what type of care we would like. We decided that an Internal Medicine clinic physician and clinic with a coumadin nurse would best meet our needs. Our pediatrician gave us a recommendation and we set up an appointment to meet the Internal Medicine doctor at the pediatrics clinic so that Chloe would be in a familiar, comfortable setting. The meeting went well so we scheduled our daughter’s next clinic appointment at the Internal Medicine clinic. It was great that they were open to suggestions and recommendations that would be inclusive and encouraged Chloe’s participation. I asked for several accommodations (finger stick protocol, how to get an accurate weight, and how to present questions to Chloe and to please give her the time to process and respond). I had access to her lab results so was able to respond, ask questions via email and got great results in communication from the clinic.
Chloe has transitioned to her own apartment with the Community Model of Living. As parents, we wrote a plan and had several discussions as to who would take care of what aspects of Chloe’s medical care. Her staff does take her to clinic appointments, and I have access to the appointment results through My Chart. If there are any questions, I will have a discussion with Chloe’s home staff and/or clinic staff. Everyone has been very accommodating and willing to share. We all have one goal – good health care for Chloe.
We have had one glitch so far in the transition…. Chloe’s pediatric cardiologist announced his retirement (we had been with the same cardiologist for 21 years). He suggested a cardiologist that worked with pediatric and adult patients, so we set up an appointment with her at Chloe’s next annual visit (same clinic we had been going to for 21 years). We liked the new cardiologist, so when we got the reminder for her next appointment, I called to set it up. I was told that the cardiologist only did “transition” patients and that we would need to choose another cardiologist at a different clinic. I shared with the clinic that I had not understood that and felt that that should have been made clear at the onset of the transition planning. It never occurred to me that the “transition” cardiologist would not be the physician Chloe would be seeing for ongoing cardiology care.
We are now in the process of finding a new cardiologist that will provide continuous care, that works with young adults with Chloe’s diagnosis and a physician that truly practices Family Centered Care. It’s what we have learned to expect over the years and is important to have care that is shared with all Chloe’s specialists and includes her family and staff. Here we go again… it’s another adventure in medicine!
Written By: Rebecca Schlough, Training Coordinator