Transition from pediatric to adult-centered care†

Abstract

Advances in the care of the child with moderate-to-severe chron-ic kidney disease (CKD stages 4/5) has resulted in a substantial improvement in patient survival over the past three decades.1, 2 Pediatric nephrolo-gists have recognized that superior medical outcomes, along with the necessary atten-tion directed to growth, development, and health-related quality of life (HRQOL) can only be achieved with a multidisci-plinary team of professionals including specialty nurses, surgeons, and dietitians, along with psychosocial support provided by social workers, psychologists, child life/play therapists, and, in some European centers, youth workers.3 Therefore, the care of children and adolescents with sig-nificantly impaired kidney function should be concentrated at clinical sites where the expertise and support counterbalance the travel time and distance factors that may at times be burdensome to affected families.4

A product of the successful management of CKD throughout childhood is the ultimate need for transition to adult-centered care, a topic of growing interest and action around the globe.5, 6 With the growth of adolescent medicine, the term “transition” was coined and defined in 1993 as the purposeful, planned process that addresses the medical, psychosocial, and educational/ vocational needs of adolescents with chron-ic physical and medical conditions as they move from child-centered to adult-oriented healthcare systems.7 Noteworthy is the fact that transition preparation is a process, and transfer to an adult unit should ideally only take place at the successful conclusion of the transition process. As part of that pro-cess, young people need to be increasingly involved in the management of their own care so that they develop the necessary self-management skills to cope with the changes that are sure to occur following their trans-fer to an adult center.

Of course, all of this often takes place on a backdrop of anxiety on the part of the patient, family, and both pediatric and adult-centered staff.8, 9 Pediatricians are regularly accused of spoiling their patients in the pediatric unit and being hesitant to let them go, and adult physicians are accused of giv-ing little attention to the transferred young adults and their unique needs. Consensus statements directed toward kidney trans-plant centers—settings with the greatest anxiety about “getting it right”—have been developed by expert panels to help guide transitions.10, 11

The general consensus between pediatric and adult clinicians is that transfer to an adult-centered program should take place when the adolescent/young adult is “mature enough,” in contrast to a specific age. This means that the decision must be individualized and should take into con-sideration pediatric-centric aspects of care (e.g., growth hormone therapy for growth retardation), as well as the need for fur-ther educational and psychological support. Impulsive behavior, risk taking, and rebel-lion are cardinal features of adolescence. If the problems of long-standing chronic illness, body-image changes, and changing family support are superimposed on the need to transfer to an unfamiliar team of healthcare providers upon whom one must now be somewhat dependent, it is hardly surprising that high rates of non-adherence may occur if these issues are not adequately dealt with prior to transfer. This scenario can have disastrous medical consequences when, for example, a young person loses a stable kidney transplant and must return to dialysis with all of its inherent short- and long-term risks, along with a substantial decrease in QOL.12

Before transferal to an adult program, we strongly suggest that the adolescent/ young adult participate in and complete a formal transition plan that is carried out under the direction of the pediatric nephrology team. In our centers, this is introduced in the form of a booklet or cur-riculum designed to “coach” the young person toward a self-management status in which he/she understands his or her medi-cal condition, the medication regimen, and all the arrangements that an autonomous individual will need to make to succeed in an adult-centered program.16 Studies are in progress to measure the effective-ness of a structured transition process in terms of the acquisition of these skills in order to make the transition process more evidence-based.9, 17

Young adults and their families should have a major role in selecting the adult-centered program that will be oversee-ing the patient's care following transfer. Pediatric nephrology programs draw their patients from a wide geographical area as a result of the uncommon nature of the disorder, and thus the young person should have the opportunity to choose a program that is convenient geographically and/or in relation to his or her future educational or vocational choices.

One of the issues that is often raised by young people and their families is the anxi-ety and sometimes sadness associated with the need to leave the pediatric nephrologist and team members with whom they have had a long-standing and often personal relationship, despite recognition of the suc-cess associated with achievement of this important milestone. Equally important, it may be that the child suffers from a chronic condition with which adult nephrologists have very little experience (e.g., cystino-sis), prompting additional anxiety from both the pediatric and adult perspectives. In this situation, a case may be made for establishment of an adolescent/young adult nephrology clinic that is staffed by experts in pediatric and adult renal care. This will often be dictated by personal interest, patient volume, and fi scal considerations.

A recent paper by several internists expressed the need for better training in congenital and childhood-onset conditions as a result of improved pediatric patient survival, an education void that could be addressed in the training programs for both pediatric and adult nephrology.18, 19 The development of a regional workshop attend-ed by members of the pediatric nephrology team, adult team members from a variety of recipient programs, and recently transi-tioned young adults, is another means by which a better understanding of pediatric and adult issues by all care providers has occurred.

Although discussions and efforts relat-ed to transition in nephrology are usually focused on patients with CKD stages 4 and 5, it should be recognized that there are also a number of children who have recovered from acute kidney injury, or who have long-term conditions such as refl ux nephropathy and are living with CKD stag-es 1-3. At the same time, adult physicians have been hard pressed to cope with the adult CKD “epidemic” as a result of greater community screening. We, in turn, need to achieve consensus on whether patients without hypertension, with minimal pro-teinuria, and with a GFR > 60 mL/min/1.73 m² need referral to adult nephrology care or should be followed in primary care with instructions to re-refer if there is any evidence of clinical deterioration.20 Children who have had major urological problems during childhood, many of which are associated with renal impairment, may be better looked after in a young adult urol-ogy service combining both urological and adult nephrology expertise.

Given the small number of patients being transferred each year to adult-centered pro-grams, each pediatric program must deter-mine how best to complete the transition process. Whereas in some it will take the form of an annual transfer clinic, in others it will take place on an individual and con-tinuous basis. In each case, a young person should have been prepared via the transition plan with on-site visits to the adult unit, particularly if the transfer is associated with ongoing dialysis care.8 In many centers, the continuity of care is supported by the pediatric nephrology nurse or social worker, who can verbally supplement any written information provided to the adult program.

The pediatric nephrology team needs to prepare a summary including all the relevant medical/psychosocial/nutrition information that can be shared with the adult program and the young person themselves. The successful management of chronic illness in adulthood requires both manage-ment skills and continued social support. Accordingly, some family members should be encouraged to attend the transfer clinic and/or the initial medical visit with the new physician and team members. However, the majority of interactions should be between the young adult and the physician(s), along with any other professionals who have been involved with the transition process, such as the nephrology nurse or social worker.

We know that young people learn and benefit a great deal from peer sup-port. Some pediatric programs have had the advantage of having youth workers as team members, individuals who specifically support young people by helping to nurture their self-esteem and by coordinat-ing peer support groups.3, 21 Similar work has been carried out by social workers and child life therapists. This has culminated in important in-center interactions or, on occasion, supervised transition residentials where young people spend several days away from home during which time they can be involved in role play and coaching about transition-related issues.22 These interactions can be particularly valuable when they are attended by young adults who have made the transition to an adult-centered program and can return to discuss their experiences and adopt a peer mentor role. In the UK, National Kidney Care has initiated a “young adult project” to for-mally assess the need for support of young adults in adult renal programs.23

The transition from pediatric to adult-cen-tered care is an important component of patient management and should be indi-vidualized to provide each adolescent or young adult with sufficient skills and knowledge to make the experience positive and successful. It is imperative that as part of the transition process, there should be a sharing of skills and information between the pediatric and adult nephrology care providers. Ideally, communication about and improvements in a center's transition program should be promoted by “transition champions” in both pediatric and adult programs, with the regular involvement of young people, parents, and members of the multiprofessional teams. Finally, and most importantly, there is a need to collect and share experiences regarding transition and to conduct prospective studies to better define the content deemed most important to a successful transition experience.