NASHVILLE-Change is hard when it comes to the transition of children with kidney disease from pediatric to adult care, and health care professionals on both sides of the process must work together to make sure patients and providers alike are prepared. This was the message of a session presented here at the National Kidney Foundation (NKF) Spring Clinical Meetings.
On both the pediatric side as well as the adult side we need to become more aware of the issues that have an impact on a successful transition and what we can do to address those issues, said session cochair Bradley Warady, MD, Chief of the Section of Pediatric Nephrology and Director of Dialysis and Transplantation at Children's Mercy Hospitals and Clinics in Kansas City, MO, as well as Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine, in a phone interview after the meeting.
We're recognizing that we can't do this a week or a month or even a year before the kids are chronologically ready to transition; this has to be done over a period of years, and it has to be done not just based on chronological age but also on emotional age-when the child is actually ready to take on much more responsibility.
Cutting the Umbilical Cord
The close relationships that develop between pediatric providers, their young patients, and their patients' caregivers can make the move to a new center with new providers an anxiety-inducing proposition.
One of the main issues is the dependence that the children with chronic illness develop on their health care providers, and the dependence that the families develop on their health care providers, Dr. Warady said.
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Trying to sort of break that umbilical cord is a very, very difficult thing because as pediatricians we many times have really brought these kids through very challenging times.
There's a lot of anxiety on the kids' part in terms of moving to a situation where they're basically being cared for by a whole new group of providers that they have no knowledge of, and the parents feel the exact same way.
There's a lot of anxiety on the part of the pediatric providers themselves. They're anxious in terms of will these children with whom they've developed sometimes lifelong relationships get the care they deserve when they are moved into the adult side, where the number of patients is far greater than the number of patients in pediatrics.
Geography can pose physical barriers when transitioning a pediatric patient to adult care, said Fred M. Kouri, LMSW, Clinical Supervisor at Children's Mercy Hospitals and Clinics, in an interview following his presentation at the meeting.
Since children generally must travel farther for nephrology services than adults because of the smaller number of pediatric providers, the transition of care does not always happen within the confines of a greater metropolitan area.
Freestanding children's hospitals can face additional obstacles because they may present fewer opportunities for interaction between pediatric and adult providers compared with children's facilities within a major medical center, where pediatric and adult providers practice in closer proximity to each other, Dr. Warady noted.
The age at which a child develops kidney disease also can determine transition success, Mr. Kouri added.
We have a patient now who I think was 16 and just all of a sudden went into kidney failure. He's had a pretty normal life, football and everything else-his normal development was void of any kidney problems-but those kids who start from birth have these added cognitive issues, family dynamics, so I think the transition process is easier for those kids who just developed kidney disease later in their adolescence.
Communication Between Providers
In order to be successful, the transition from a pediatric to adult center can't just be about the physical move but must involve careful thought and planning before, during, and after the actual switch of health care providers.
In an ideal world, the adult providers and the pediatric providers, including social workers, dietitians, physicians, and nurses, would work together to address the anxieties associated with the transition, Dr. Warady said.
That is a challenge that we really need to continue to work on because I think in many situations, probably in most situations, there's not a lot of interaction surrounding the transition of a child.
Communication can help foster a better understanding of the child moving to an adult practice.
I think that the adult care providers have to recognize the fact number one that the children are frightened, Dr. Warady said.
They have a chronic illness, and they've grown up in a pediatric center, and now they're with strangers. I think that this demands a bit more attention if you will then the 'average patient.'
I think they also have to recognize that some of the kids may be chronologically a certain age, but they may not be emotionally that same age. We have to recognize that as well and not look at them just from a chronologic age but from a developmental age.
Figure. Interaction ...Image Tools
Because adult providers don't see a lot of transitioned patients, very few ever become experts in treating these patients, Dr. Warady noted.
I think that's one of the obstacles to success of transition. That's why I think the communication, the interaction, between the adult care providers and the pediatric providers is so crucial because I think we can learn from each other. We can teach each other how we can make the process better.
Role of the Social Worker
Interactions between the pediatric care team and the adult care team should include all key adult providers, not just nephrology professionals, Mr. Kouri said during his presentation on the social worker taking the lead in the transition process.
Social workers should talk with adult providers-in person, if possible-about a patient's learning style, communication style, and educational needs, as well as about the family's involvement, he said.
Coordination of community services and creation of a post-transfer plan for communication and involvement are also important components of the social worker's role.
To examine how the pediatric center was doing with the transition process, Children's Mercy Hospital conducted a review of dialysis and transplant patients who had made the transition between January 1995 and September 2001, with 21 of 30 patients responding.
A retrospective chart review was conducted, as well as clinical interviews in person (one patient) and by phone (20 patients).
One of the problems identified with transition was the number of days that elapsed between the last pediatric visit and the first adult visit for transplant patients.
While the first adult visit was scheduled to take place within 30 days of the last pediatric visit, the actual number of days between visits was 71 on average, and one patient even waited 168 days before going to the adult provider.
This was one of the big red flags for me, Mr. Kouri said.
Hemodialysis patients had their last visit at the pediatric center on a Friday and their first visit at the adult center on a Monday. For peritoneal dialysis patients, there was a mean of 10.5 days between the two visits.
The patients also identified interventions they believed would have helped them feel more prepared for the transition:
* Pediatric providers communicating with all members of the adult renal and nonrenal health care team: 90%.
* Leaving the children's hospital with personal copies of important medical records: 86%.
* Knowing they could call the children's hospital if they had questions after the transfer: 71%.
* Knowing the likely questions they may be asked by the adult providers: 52%.
* Having the pediatric social worker attend the first clinic visit at the adult center with the patient: 43%.
Survey of Social Workers
The NKF Council of Nephrology Social Workers (CNSW) looked at transition from another perspective, that of pediatric and adult social workers, in a 2009 survey.
Of the barriers to a successful transition identified by the 20 survey respondents, nine of whom worked in adult care and 11 in pediatric care, the one most commonly cited was that patients felt unprepared for the transfer. Other frequently mentioned barriers included complicated medical conditions, a lack of support from the social worker's institution or team to create a transition program, and parents or caregivers not being prepared for the transfer.
The respondents also shared their biggest concerns in working with adolescents: never before having worked with an adolescent patient, not getting notice from the unit on transitioning patients, not having enough time to help these patients as much as they need, and the patients not knowing their insurance and benefits.
There needs to be a reevaluation of some of the social worker tasks and time constraints that limit their involvement in transition planning, Mr. Kouri said.
Pediatric centers also need to have a transition program, he added in an interview after the meeting.
You need an established process, and you need buy-in from the whole team. I think the fundamental question is, 'Are the processes that they have, the way they're interacting-just their program structure-helping facilitate that young adult transitioning to adult care?'
Are they seeing the kids without the parent in the room sometimes? Are they trying to connect them to an internal medicine doc when they turn 18? I think there are things that can happen that don't cost money and don't take a lot of time.
Formal Transition Program
The University of North Carolina (UNC) Kidney Center has one of the more formal processes for transition in the country, Dr. Warady noted.
This process, called the STARx Program, has three main components: a medical passport, a patient-administered transition readiness survey, and a provider-administered transition scale assessment, noted Maria Ferris, MD, MPH, PhD, Associate Professor at the University of North Carolina Kidney Center, in her meeting presentation.
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The credit-card-sized, homemade medical passport serves as both a patient education tool and provider communication tool.
A portable medical record, it is given to all patients in the transition program at the UNC Kidney Center. It features a picture of the patient, as well as the patient's name, date of birth, and insurance information. The back of the passport includes a list of the patient's medications and why those medications are taken, information on diagnosis and allergies, and important phone numbers.
Dr. Ferris and her colleagues have looked at patient adherence in keeping the passport. Of 54 patients with chronic kidney disease (CKD), 78% had the passport six to nine months down the line. Of 27 patients with gastrointestinal diseases, 63% still had the passport.
The Transition Readiness Survey includes 18 questions on self-direction, self-management, knowledge of condition, and self-activation. It takes no more than 10 minutes to complete and is self-administered every six months to help track and determine how prepared a patient is to make the transition to adult care.
Data from the Transition Readiness Survey has shown that patients 16.6 years of age and older are more likely to use pill boxes, schedules, or alarms as reminders to take their medications. Patients with CKD were more likely than patients with other chronic conditions to make their own appointments and use pill boxes, and females did slightly better than males on the survey, with higher scores for self-activation, for example.
The Transition Scale Assessment is a measure of patients' readiness to make the move from pediatric to adult care. Patients are scored on 33 questions administered by a health care provider. They are asked to name their health care condition, list its symptoms, and discuss how the condition may affect them in the future, for example, as well as list the medications they take and when they take them.
The assessment takes 7.56 minutes to administer, and the interrater reliability weighted Kappa is 0.71, Dr. Ferris said.
So far, 260 patients have completed the survey, and their scores are low, Dr. Ferris said, averaging between 5 and 6.3 points out of 10 depending on the patient's age group.
I'm not saying this is the answer, she said. I'm saying this is the tool we use.
As far as at what age to start transition education, the earlier, the better, Dr. Ferris noted.
Measuring Success
Tracking the success of a transition program with quantitative measures, like Dr. Ferris is doing at UNC, is key, Dr. Warady noted.
Transition is a process-it doesn't simply end with the physical move to an adult center. As such, patients must be followed after they have made the move so that the success of the transition program can be analyzed.
I think one of the areas that we spoke about at the conference that has really been under-investigated is the perspective of the transitioned child at some point in time after the transition, Dr. Warady said. We do a great deal of thinking now, and we're beginning to do action, in terms of getting them ready for transition and moving them so they are in the adult program in a successful manner, but what happens to them three months, six months, a year down the line in terms of what did we do well and what did we not do so well?
A successful transition is just as crucial as improvements in treatment, Dr. Warady added.
What's most important is the universal recognition of the importance of this to these very special kids, and while we do a lot to figure out better approaches to treating high blood pressure and better means of dialysis and better means of transplantation, we have to understand that for this group of kids successful transition is equally important and everything else that we do becomes secondary if the transition process is not successful.
© 2009 Lippincott Williams & Wilkins, Inc.