When it’s time for young adults to make that jump from pediatric to adult nephrologists, it can be daunting and nerve-racking. Will it be the same? Who is this new person? Will they know my medical history? Will we have to go through the same treatment strategies again? What is everyone’s role? Am I ready to take on my health care responsibility? All of these questions are running through the mind of the patient and the parent. As an adult nephrologist, my clinical workflow can be quite different from a pediatric nephrologist. It can often be a daunting task for me when it comes to taking over the care of a pediatric patient who is making the adult service leap.
A study by Joslin et al., published this week in BMC Nephrology, discussed the focus that is placed on the clinical outcomes when evaluating these transition clinics, but what about psychosocial outcomes? The study evaluated young adult patient perspectives of their transition program using Likert questionnaires and interviews to address the readiness to transition, the transition process, and the perception of adult care. The average age of transition was 20 years old and the majority were ready to transfer to the adult health care environment, often insisting they were ready earlier than their transition was planned.
adolescents with renal disease are seen as a particularly vulnerable group
However, adolescents with renal disease are seen as a particularly vulnerable group. There might be variability in maturity, cognitive delays, establishing their identity and feelings, body image development, personal values, and developing their adult roles. This adds to the list of service transition challenges for both young adults and nephrologists.
What are some of the other key challenges young adults and nephrologists face with transitions?
Timing of transition
When should young adults make that leap to adult health care? It may need to be individualized. Every young adult is different. The discussion should start during checkups or routine office visits between 12-14 years old. Ideally, young adults will start to transition to adult health care between the ages of 18 and 21 years.
Difficulty navigating adult health care system
Many differences between pediatric and adult nephrology clinics have been previously outlined. In pediatric nephrology clinics, the visits are family-oriented and multidisciplinary teams/support is readily available. In contrast, adult nephrology clinics are typically focused on the individual, with limited multidisciplinary support and knowledge of rare ‘pediatric’ diseases. Young adults making the transition to adult health care environments have often been followed by their pediatric nephrologist since birth or childhood so they usually have an understanding of everyone’s roles in the pediatric nephrology clinic. But, once they make the transition to the adult environment a common complaint is knowing what the role of everyone is in this new health care system including their own role.
Parents are key players in the health care of their children and valued as integral members of the health care team. Once a young adult transitions to the adult health care system, parental involvement is transitioned to the sidelines. Are young adults (and parents) ready for that? Young adults might dismiss their ability to handle their health care needs and they do not have the experience to deal with managing treatment decisions, consenting to treatments, comprehending instructions, etc. The experiences of young adults and parents have previously been described in the literature.
What are the strategies young adult patients and nephrologist can implement to mentally prepare for the healthcare transition?
The International Society of Nephrology and the International Pediatric Nephrology Association provide a consensus statement outlining the ideal clinical management of young adult patients transitioning from pediatric to adult renal services. By implementing a transition program, you can create a more fluid process for transitioning young adults. A few key recommendations from the consensus statement include:
- Transitioning a young adult patient should be individualized and agreed upon by the patient and the parents in conjunction with the pediatric and adult health care teams.
- A transition champion in the pediatric and adult health care units should be identified to help coordinate and educate on the transition.
- The young adult should be able to receive tools to aid in developing self-management skills.
A lot can be gained from studies aiming to understand how best to transition young adults from pediatric to adult services. What’s clear from the work of Joslin et al. is that we should also focus our evaluation of these transition clinics not only on the clinical outcomes but the psychosocial outcomes of the young adults making the adult service leap.