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Preparing Patients to Never See You Again

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Recently I got a message from a young woman with juvenile arthritis whom I have followed for several years. She wrote to inform me that she has established care with an adult rheumatologist that I know and had recommended, and thanked me for having taken care of her all these years. She also wanted to let me know that she was on the pre-med track and that she was planning to do summer research at a prestigious university and promised to keep me appraised of her journey as she pursued a career in medicine. While I was sad to see her leave, I was happy that she found a good adult rheumatologist and was able to transition when her disease was well controlled, so she could establish a relationship with the new doctor. This incident made me reminisce about the process of patients transitioning out of pediatrics.

One of the unique issues in pediatrics is the fact that our young patients with chronic diseases that we have followed for years have to move on to adult medicine practitioners at some point. As a pediatric subspecialist with more than two decades of experience, I have several personal observations. Depending on the health care system, family preferences, and restrictions imposed by the payer, the age at which transition happens can vary. Our own method has been to take new patients until the age of 18, but offer established patients the option to be followed until the age of 21. I have had patients choose both options, with some leaving as soon as they turned 18 and others who stayed until 21. There was one young lady who was in college who came in for follow-up every 6 months, including one last appointment the day before she turned 22!

No matter at what age a patient decides to move out of a pediatric practice, the process of transition should begin years before. The ultimate goal of transition is for the patients to gradually assume responsibility for their own health care and decision-making instead of relying on their parents. You can help prepare your teenage patients to report their symptoms and interim history, know the names and doses of their medications, the names of their other specialists, and when their appointments are. Teenage patients should be encouraged to send messages using the electronic portal, and when you write back make sure to address the teen patient as well as their parent. One indication of readiness is when some older teens drive themselves to the visit and are able to navigate the visit without needing to call and place their parents on speakerphone. Another important consideration is the ability to administer their own medications, including injectable medications, with comfort.

In my experience, the best transitions are those in which we have had a chance to discuss the transition well in advance, feel that the young patient and their family is ready for transition, and are able to identify a suitable adult clinician and help facilitate an appointment. Many of our patients have family members that see an adult specialist that they love and that usually is another good option. When they don’t have a preference and look to me for advice, I offer a list of adult specialists, including many that have spent time in our pediatric rheumatology clinic, where I have personal knowledge of their clinical and interpersonal skills. Another great option is to transition to an internist who has a network of specialists they have relationships with that the patient can benefit from.

Once a new specialist is selected, I will often send a message to the specialist, so they can contact the patient for an appointment. Ideally, I have the patients make an appointment with a new doctor four to six months later, and I will see them for a final visit, at which time I can confirm that they have an appointment. I will review their history and course with them, making sure they know what to communicate to their next clinician, and also summarize the information in my note. I ensure they have enough medicine refills until they see the new doctor. This has worked well for the patients, as well as for the doctors involved.

I have had occasional patients that transition to a new specialist but after several months call to see if they can come back to the comfort of a pediatric health care system. I encourage them to stick it out longer or suggest other clinicians based on the reason they wish to return. I believe some of this is due to the differences between pediatric and adult hospital systems, and the weight of the responsibility they have to take care of their own health. Now I try to prepare them ahead of time to expect the experience to be different from pediatric hospital systems.

Some of the worst kinds of transitions are those where a patient with a chronic disease, who needs monitoring and medications, simply stops showing up as they get older. In talking to several of them, I have come to appreciate some of the challenges and complexities of the health care system including when they lose insurance, or their job, or have no transportation and so on. I point them to our social worker or provide them with resources, including some clinics that have patient assistance programs. But one case stands out: a patient with lupus stopped coming to us when she turned 18 and about a year later I got a call from the intensivist from an outside hospital where she had been admitted with renal failure as she had been pursuing alternative medicine treatments.

Many of the patients and their parents dread hearing the words that it is time to look for a new doctor outside of the pediatric system. If the transition has been an orderly and planned one, this is not a surprise and they are much better prepared and accepting of the process. I remind them that this is analogous to children leaving home to go to college. After all, as a parent, I know that my own children will someday want to establish their independent lives and I am willing to accept that as part of life. This helps with the acceptance of the need for a healthy transition.

Over the years, periodically, I receive emails and cards from my former patients. It is nice to know about accomplishments in their personal and professional lives. These are reminders that they have successfully transitioned to take control of their own health.

Dr. Sampath Prahalad is a Professor of Pediatrics at Emory University and is the Chief of Pediatric Rheumatology at Children’s Healthcare of Atlanta. He is a physician, scientist, scholar, and mentor with a focus on juvenile arthritis, familial autoimmunity, and translational research. A devoted father and a husband, when he is not in the hospital, he loves to hike, travel, or try a new recipe on his instant pot. Dr. Prahalad is a 2021–2022 Doximity Op-Med Fellow.

All names and identifying information have been modified to protect patient privacy.

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