Caring for the Teenager in an Adult Unit

Overview of Transition/Transfer to Adult Care

Adolescence is known as a period of transition toward adulthood that is characterized by significant developmental changes in cognitive, emotional, and social domains. For adolescent/young adult dialysis patients, this process also involves the acquisition of self-managed medical care. For many patients, this time is also marked by treatment nonadherence, lapses in medical care, and poor outcomes. As this transition progresses, patients must transfer from pediatric care to an adult treatment setting at some specific point. This change represents a distinct shift from supervisory, child-centered care to self-directed treatment, thus, moving from a more dependent to independent role. The exact timing of transfer often varies based on patient- and site-specific factors, and therefore, offering a standardized approach is challenging. This chapter provides a review of issues relevant to the management of teenage and young adult dialysis patients receiving care in the adult nephrology setting. Recent empirically supported approaches to addressing transition and transfer of care are presented, followed by a discussion of functional outcomes during this time. Other special considerations for this patient population, including perspectives of transitioning patients and families and other posttransfer recommendations, are also reviewed.

Transitional Procedures for Pediatric Dialysis Patients

Guidelines established by the International Society of Nephrology/International Pediatric Nephrology Association state that preparational efforts should be made to help support patients prior to the transfer of care from pediatric to adult settings. However, there is a great deal of variation across dialysis centers in specific transitional procedures. For example, there is no standardized time of transfer; patients may be transferred from pediatric to adult care anytime between ages 16 and 26 years. Some sites have strict guidelines dictating when patients transfer, while others take a more individualized approach to the process. Specific procedures may be influenced by local rules and regulations.

The importance of preparing patients for transition well before the transfer process is initiated and widely recognized. This preparatory approach may involve encouraging patients to begin assuming a greater role over their health care early in adolescence. However, adolescence is known to be a high-risk period for nonadherence. At the same time, as patients are getting ready to leave pediatrics, they may be extremely vulnerable to disruptions in their health care management. Indeed, a seminal paper by Watson described a sample of 20 transferring renal transplant recipients. Over a 36-month follow-up period, seven patients (35%) lost their graft. It appeared that patients struggled with shifting to a new care team and managing their health care responsibilities, such as medication taking and appointment attendance, independently during this time. An abundance of data supports the relationship between the transitional time period, nonadherence, and poor outcomes such as graft loss.

The results of a 2006 survey conducted by Bell of 58 pediatric dialysis centers in North America and Europe highlighted a number of specific problem points for transferring patients. One concern is the relative lack of dedicated transition programs. Only one-third of the responding centers reported having a transition program but most expressed a need for one. This finding has persisted over time. A more recent survey of 49 nephrology centers in the United States indicated that only 23% had a transition clinic in place. Similarly, a study of centers in Japan found that just 4 of 101 centers had a formal transition program. In the Bell study, respondents were also asked if their adult care counterparts had support in place for patients exhibiting nonadherence; this was the case for only 26% of the centers. However, some elements of preparation appeared stronger. For example, most sites reported that their patients were able to visit and choose their adult dialysis center before transferring. The majority of sites also reported that resources were available to assist transferring patients with navigating changes in insurance benefits. Self-management was assessed as well. Fewer than 20% of respondents reported that their adolescent patients were self-managing their care as measured by making appointments and filling prescriptions autonomously at least 60% of the time, although patients' mastery of PD administration was better (48% could do so 60% of the time). Data also suggest that validated assessment tools are inconsistently used by providers to assess readiness to transition.

As highlighted by these data, several distinct challenges may emerge during the transfer process. These include systematic patient and family barriers to a smooth, successful transfer. At the systematic level, there are issues specific to each service as well as general considerations. On the pediatric side, scarce resources or inattention to transition or transfer may lead to poor planning and preparation. These concerns are faced on the adult side as well; staff may be less accustomed and equipped to meet the special needs of adolescent or young adult patients. Overall, there may be a lack of communication and coordination between pediatric and adult units, which certainly disrupts this process. Patients may be resistant to leaving familiar, trusted providers, a sentiment that is often echoed by family members as well. In the face of such challenges, patients may not be able to form connections with their new providers easily, and this could translate into disengagement and nonadherence.