Study Uncovers Gap in Care Transition for Young Adults with Kidney Disease

Research study background

The transition from pediatric to adult medical care is a particularly critical and high-risk period for young adults with kidney disease. During this vulnerable time, disruptions in care, medication nonadherence, kidney transplant complications and hospitalizations are more prevalent, contributing to greater risk for poor outcomes and death. In 2011, international pediatric and adult nephrology experts recommended that programs offer a structured process to improve transition of care. More than a decade later, an assessment by Children’s Hospital Colorado and Northwestern University Feinberg School of Medicine found significant gaps remain.

“The current evidence base for kidney disease care comes primarily from two distinct populations: pediatric studies focused on school-age children and adult clinical trials that typically enroll participants with an average age of 60,” said Angelina Dixon, MD, one of the authors of the study. A dual-trained nephrologist, Dr. Dixon practices in the Pediatric-to-Adult Nephrology Clinic — a joint program between Children’s Colorado and the University of Colorado School of Medicine.

“By focusing our research on patients aged 14 to 24, we aim to develop evidence-based approaches tailored to the unique needs of this population and support a seamless transition of care.”

ANGELINA DIXON, MD

For this study, researchers distributed surveys to 488 academic programs, seeking to understand their pediatric-to-adult care transition practices and related challenges with care delivery. Unique surveys were sent to four program types: adult general nephrology, adult transplant nephrology, pediatric general nephrology and pediatric transplant nephrology. The overall response rate was 39%.

Among the 188 programs that responded, only 38 (20%) reported having a transition clinic. Eighty-nine programs had a transition protocol without a clinic, while 61 programs had neither a transition protocol nor a clinic. Adult programs were significantly more likely to lack a transition clinic or formal protocol than pediatric programs (42% vs. 20%).

Programs with transition clinics varied significantly in structure and the roles of involved providers. Just 27% had been operating for more than a decade, aligning with the release of the guidelines, while approximately half had been in operation for five years or less.

The authors noted that some of the programs that reported using transition protocols as their sole approach fell short of comprehensive transition care practices and often failed to include basic steps, such as transferring information to the receiving institution.

Forty-five pairs of partnered adult and pediatric programs participated, with 51% differing in their responses about transition practices. Among the discordant pairs, 48% were pediatric centers with a transition protocol and adult centers with no protocol or clinic.

Among the 150 programs that reported not having a transition clinic, half of the 119 comments submitted cited resources and finances as barriers. Adult programs were more likely than pediatric programs to mention no need or obstacles preventing them from establishing a clinic.

Clinical implications

The results of this study highlight the lack of communication and collaboration between adult and pediatric nephrology centers. These findings indicate that many young adults with kidney disease do not have the necessary resources to enable their successful transition from pediatric to adult care.

In their conclusion, the study authors emphasized the importance of adult nephrologists recognizing their role in bridging this critical gap and engaging in the development and support of transition programs.

To assess how prepared providers are to meet this responsibility, the team conducted a related survey study of adult and pediatric nephrologists. Published in September 2025, the findings revealed that nearly half had never received transition training. The majority expressed interest in additional education, particularly during fellowship training.