Key Points:
Despite recommendations, many nephrology programs lack a structured transition clinic or transition protocol for young adults.
There is a lack of coordination between partnered adult and pediatric programs to establish formal transition practices.
Adult nephrology programs generally perceive a lower need for health care transition practices compared to pediatric nephrology programs.
Background: The transition from pediatric to adult care can be challenging for young adults living with kidney disease. The International Society of Nephrology recommends establishing a transition process for this vulnerable population. The prevalence of nephrology transition clinics and protocols in academic medical centers, however, is currently unknown.
Methods: General nephrology and transplant nephrology programs were surveyed at both pediatric and adult medical centers to explore the current state of nephrology transition practices. Programs without transition clinics were asked to identify obstacles preventing the establishment of a transition clinic.
Results: Overall, there were 488 programs targeted for survey distribution. There were 188 survey responses with an overall response rate of 39%. Only 20% of programs had a transition clinic, and 32% of programs reported neither having an established transition clinic nor a transition protocol. Adult programs were more likely to lack an established transition clinic or protocol compared with pediatric programs (42% versus 20%, P = 0.001). Of partnered pediatric and adult programs that both responded to the survey, 51% were discordant in their transition practices. For the 150 programs without a transition clinic, there were 119 comments regarding obstacles to the establishment of such a clinic. Resource and financial obstacles were mentioned most frequently (50% of comments). Adult programs were more likely to mention no perceived need or obstacles compared with pediatric programs (17% versus 4%, P = 0.04).
Conclusions: Despite guidelines recommending pediatric to adult transition programs for young adults with kidney disease, transition clinics remain uncommon. Although there are many cited barriers to the establishment of a nephrology transition clinic, our study highlights the lack of coordination and cooperation between adult and pediatric centers, which may stem from a lack of perceived need or interest from adult nephrology programs.
Keywords: kidney disease; patient-centered care; pediatrics; social determinants of health.