Being diagnosed with a chronic medical condition during childhood or adolescence shapes the lives of the patient and their family. In Rheumatology, the pediatric rheumatologist can become an additional parent and a partner. Pediatric hospitals and clinics become homes away from home. They are often painted bright colors, have comfy furniture and entertainment throughout the halls as everyone tries to make the heartbreaking reality of disease in children more palatable. Thankfully, treatment success in rheumatology is the norm and there will come a day in most patient’s lives when they need to say goodbye to their pediatric rheumatologist and find a new adult-focused rheumatologist. Transitioning from the pediatrician’s office is a day most patients and parents dread. This process, known as “transition,” is an integral part to any young person’s care.
Transition care from pediatrics to adult medicine is a process that begins the day the child or teen is diagnosed. It is a process that involves individualization and separation from caregivers and requires the participation of doctors, patients and parents. In reality, this is a process all of us go through, but the addition of a medical condition makes the need for an intentional approach even more important. Thankfully, pediatricians and pediatric hospitals have wisened up to this need as the consequences of a poor transition is well documented. Patients can fall through the gap between pediatrics and internal medicine, not get the needed care and suffer irreversible organ damage.
Why Transition Care Matters
In the past, pediatricians would often continue to manage the care of their patients well into their 30s. This was less than ideal but seen as necessary at the time. Pediatricians, especially pediatric specialists, are not the best caretaker for young adults in their 20s and 30s. Sexual health, mental health, cancer screenings and long-term consequences of medications are not emphasized aspects of the pediatric training. However, internists and internal medicine specialists also need to do their part. The unique challenges faced by young people who have been ill since childhood are often not acknowledged or understood. Assuming a 23 year old with Lupus for 10 years is the same as a 23 year old with Lupus for 6 months leads to gaps in care that leave everyone unsatisfied.
Pediatricians, pediatric hospitals and professional organizations have now stepped up and offer transition clinics and specific training for healthcare workers. GotTransition is a federally funded resources center for all things related to health care transition, a sign that this subject is getting attention from all levels. But there is still a lot of work to be done. Especially on the internal medicine side. The adult-medical world, with their 15 minute appointments, cold, sterile hospitals and clinics and lack of support staff can be shocking to patients and families accustomed to the pediatric world.
Young adults with childhood onset disease are SPECIAL
When I think back on my 19 year old self, I am full of mixed emotions. I was both optimistic and unforgivingly self-critical. The memory of that time makes me beam and cringe. Fully in my adult body but very much still a child in my head. Despite living away from home for school, I still relied heavily on Mom & Dad. I carry these memories when I take over the care for a young adult patient leaving their their pediatrician’s office. It is unfair what is asked of patients this age. Medical appointments and medications are not prioritized as they also try to figure out who they are and where they fit in the world. Acknowledging this group’s uniqueness is the first step to developing means to best care for them.
To learn more about this topic please check out this week’s video!
In good health,
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