By Cybele Ghossein, MD; and Andrew Vissing, MD
For the last 10 years our kidney transition program has helped hundreds of young adult kidney patients transfer care from pediatric nephrology at Ann and Robert H. Lurie Children’s Hospital to adult nephrology care at Northwestern Medicine.
Here’s how it works. Once a month, we hold a joint clinic at Lurie Children’s. Prior to the initial appointment, the pediatric team has determined that the young adult patient is ready for transfer to adult care. Then, both teams meet in advance to go over the patient’s medical and psychosocial history. During the clinic visit, the adult care team, which is made up of a nephrologist, a physician assistant and a social worker, meets the young adult patients and their family in the pediatric clinic space – a familiar space to those patients. We walk through what to expect in adult care, go over any questions, and schedule follow-ups before the patient leaves.
Once young adults are seen at our transition clinic, their follow up care is at the Northwestern Nephrology clinic. Young adults are seen on a separate day by the same transition team. The first appointment is used for both medical follow up as well as re-introduction of the team and their roles. Given the nature of chronic kidney disease and kidney transplantation, our patients need holistic care and for many of these young adults, our program becomes their medical home. With our team-based approach and oversight, we have achieved a follow-up rate of nearly 90% for the first three appointments following transition.
Keeping young adults engaged in their medical care requires focusing not just on their medical needs but also on emotional and social concerns that may affect their kidney disease. Building trust takes time with this age group and social workers play a key role in supporting mental health concerns. Lastly, as part of our program, we also offer a “buddy” system where willing patients are matched with other young adults to help guide them through the new system.
Despite the benefits, many medical centers in the US still do not have transition clinics in place. There are many obstacles to starting one, but this vulnerable group can greatly benefit from care coordinated are tailored to their age and needs. As the number of young adults living with kidney disease continues to grow, we must continue to expand and improve strategies to keep this group from falling through the cracks.
AAKP Resources
If you or someone you know is navigating kidney disease as a young adult, you’re not alone. AAKP’s Pediatric Kidney Pals webpage is a great place to start. Chronic illness in children and adolescents is tough—for both parents and kids. This section of our website is dedicated to helping families find support and learn more about pediatric and adolescent kidney disease.
Visit www.https://bit.ly/PediatricKidneyPals to explore resources, stories, and tools that can help guide you through the journey.
Cybele Ghossein, MD
Professor of Nephrology and Hypertension
Vice Chair of Academic and Faculty Affairs – Department of Medicine
Northwestern University - Feinberg School of Medicine
Andrew Vissing, MD
Assistant Professor of Nephrology and Hypertension
Northwestern University - Feinberg School of Medicine
