The great divide—myth or reality? Adult physician perspectives

“What is transition?” asked my colleague when I mentioned the topic of this article. As I began to explain the science and philosophy of the transition from pediatric to adult care my coworker’s expression became more thoughtful, although it was obvious that he didn’t know much about the topic. Later it became clear that there is a large amount of variability in different individuals’ knowledge of transition and in the effects of a rocky transition on those being transferred. This inconsistency exists despite the fact that almost all of my colleagues have had at least one bad experience in caring for such patients. Unfortunately, this scenario is more common than many practitioners would like to admit. But what’s the big deal? If there’s a problem, it’s with the patient and their family and not because they transitioned to an adult practice, right?

Unfortunately, that answer is probably wrong. Transition of care is an important concept for all patients but especially for those with life-altering chronic medical conditions, such as patients with CKD or kidney transplants. The mortality rate for patients between the ages of 18 to 24 years is twice as high as that for those aged 12 to 17 years (1). Renal transplant recipients in this age group also face a higher risk for rejection and graft failure due to chronic rejection (2). A landmark study of kidney transplant recipients by Watson (3) was one of the first to demonstrate that poor outcomes in this age group can be associated with the transfer out of a pediatric setting. It has been suggested that young patients are unhappy with their care after the transition, and as Watson speculated, nonadherence may be a manifestation (3). Other qualitative and mixed-methods studies have illuminated specific concerns that patients have about transitioning to an adult practice (4). For instance, a common perspective is that adult clinicians will not be attuned to or understand their needs (5). Unfortunately, the volume of literature demonstrating problems with the transfer process far outweighs that evaluating potential solutions. In order to improve this process, pediatric and adult personnel must collaborate to understand the barriers to a successful transition. And although transition is often discussed among pediatric and adolescent practitioners, the adult voice is lacking (6).

Adult physician perspectives

From an adult practitioners’ perspective, there is often inadequate communication from the referring pediatricians. For example, Okumura (7) reported that only 62 percent of internists found it easy to discuss a patient’s transfer with a pediatric provider. In addition, adult nephrology practices generally have a larger patient volume with only a small minority of young adults, because while all pediatric patients transition to adult care very few adult patients come from a pediatric practice. It is therefore difficult to change practice styles based on this minority. But perhaps most importantly, patients may not be ready to take responsibility for their own health care, and therefore they may not perform well in an adult practice. Expectations may be unrealistic and patients unfamiliar with their medical history. Many young patients have had relationships with their pediatricians for years, and it is unrealistic to expect the same relationship to develop immediately upon transfer to an adult practice.

Solutions through collaboration

How then can we improve the pediatric to adult transition process? Transition is a developmental process that should begin while patients are still in the pediatric setting and continue well beyond the transfer (8, 9). It would be helpful to conduct assessments of transition readiness and communicate concerns on both sides of the transition. At our institution an assessment of health care management skills is provided to all pediatric liver, and now kidney, transplant recipients starting several years before the transfer (10). In addition to offering information on health care management, a “Transition Checklist” is completed by patients and their families before the transfer, the results of which are distributed to the adult practice (10). This helps families take the lead in sharing information with their new providers, and pediatric team members can highlight key areas such as patient apprehension about transfer, previous history of nonadherence, and other issues. The pediatric team identifies deficits in skills that are critical for assuming primary responsibility for one’s health care (e.g., ordering refills of medications or scheduling appointments), and any gaps that remain before the transfer are again shared with the adult team. Even if these practices are not fully completed, adult teams can conduct their own brief assessments after transfer. In addition, many Internet-based tools are readily available to assess transition readiness and identify pertinent literature. A “medical passport”—a brief synopsis of the patient’s medical history they carry with them—is another simple yet useful method of communication with the adult team (11). Finally, innovative methods to improve communication with patients during transition may also benefit both pediatric and adult practices. A common theme among studies revealing poor post-transfer outcomes is that patients get lost or disengaged during the transition process (10). An Australian group working with pediatric endocrinology patients investigated whether corresponding with patients via a variety of communication modes (e.g., text messaging or social networking) improved compliance with appointments after the transfer (12). Their results suggest that such modalities may also be useful in patients with kidney disease.

Finally, although many guidelines exist for pediatric practices few have been developed for adult settings (9, 11, 13). Similarly, there is a lack of Internet-based tools aimed at the adult clinic. Transition may seem to end after transfer to an adult practice, yet practicing adult providers know this isn’t true. Acknowledging that transition continues after transfer, improving resources for adult practitioners needs to become a priority. Publishing papers on transition topics in popular high-impact general medical journals could help promote awareness to internists and specialists alike. Lastly, physicians are more comfortable using tools learnt during training, but transition is not usually taught in medical school, residency, or fellowship. Typically, learning about transition arises from the need in practice. Encountering young adults who are transitioning during one’s medical training would better equip physicians to care for such patients in the future.

It is reasonable to say that adult and pediatric providers can do better to assist patients with kidney disease as they transition to adult care. Improving the transition process hinges on communication, collaboration, and education. Good communication between pediatric and adult providers is critical when transitioning patients. Both pediatric and adult practitioners need to work together to develop and test programmatic solutions that target deficits in care. And perhaps it’s time to begin transition training earlier in the career of our future nephrologists. Simply stated, young adults should have the best outcomes, not the worst. We owe it to young adults to educate ourselves, and at times to change our practice style, to better serve this vulnerable population.

References

1. 

Park MJ, et al. The health status of young adults in the United States. J Adolesc Health 2006; 39:305–317.

2. 

Keith DS, et al. Recipient age and risk of chronic allograft nephropathy in primary deceased donor kidney transplant. Transpl Int 2006; 19:649–656.

3. 

Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 2000; 14:469–472.

4. 

Reiss JG, et al. Health care transition: youth, family, and provider perspectives. Pediatrics 2005; 115:112–120.

5. 

Patterson DL, Lanier C. Adolescent health transition: focus group study of teens and young adults with special health care needs. Family & Community Health 1999; 22:43–58.

6. 

Peter NG, et al. Transition from pediatric to adult care: internists’ perspectives. Pediatrics 2009; 123:417–423.

7. 

Okumura MJ, et al. Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics 2010; 125:e748–e754.

8. 

Bell LE, et al. Health care transition for adolescents with CKD—the journey from pediatric to adult care. Adv Chronic Kidney Dis 2011; 18:384–390.

9. 

Bell LE, et al. Adolescent Transition to Adult Care in Solid Organ Transplantation: a consensus conference report. Am J Transplant 2008; 8:2230–2242.

10. 

Annunziato RA, et al. A translational and systemic approach to transferring liver transplant recipients from pediatric to adult-oriented care settings. Pediatr Transplant 2010; 14:823–829.

11. 

Ferris ME, Mahan JD. Pediatric chronic kidney disease and the process of health care transition. Semin Nephrol 2009; 29:435–444.

12. 

Holmes-Walker DJ, et al. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with Type 1 diabetes aged 15–25 years. Diabet Med 2007; 24:764–769.

13. 

Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011; 128:182–200.