It is well documented that kidney transplantation is the treatment of choice for children with end-stage renal disease. Pediatric kidney transplant patients are a complex population because of their need for lifelong immunosuppression, potential for delayed growth and development, and increased risk of heart disease and cancer. Although many large pediatric kidney transplant programs use nurse practitioners, the role of the nurse practitioner is still emerging in relation to the transplant coordinator role. This article describes the practice of pediatric nurse practitioners caring for children who require a kidney transplant and why nurse practitioners are ideal for providing comprehensive care to this population. Transplant programs are regulated by the United Network for Organ Sharing and the Centers for Medicare and Medicaid Services. Both organizations require transplant programs to designate a transplant coordinator with the primary responsibility of coordinating clinical aspects of transplant care. Incorporating transplant coordinator activities into the role of the pediatric nurse practitioner is discussed as a model for providing care throughout the process of kidney transplantation. Transplant pediatric nurse practitioners are in a unique position to expand the care for pediatric kidney transplant patients by assuming the role of clinician, educator, administrator, and coordinator. (Progress in Transplantation. 2011;21:306-311)
The first pediatric kidney transplant was performed in 1959. Kidney transplantation is well established as the treatment of choice for children with end-stage renal disease (ESRD) because it allows improved growth and development and avoids the potential complications of dialysis and azotemia. Today, patients' survival rates 1 and 5 years after pediatric kidney transplant are 98% and 93%, respectively, and 5-year graft survival rates are between 77% and 85%, depending on whether the transplanted organ is from a deceased or a living donor.1 Complexities of pediatric transplant patients include the burden of lifelong immunosuppression, the risk of delayed growth and development, and the management of long-term medications. These unique patients demand a multidisciplinary approach to care. The ever-evolving field of transplant medicine provides a unique opportunity for pediatric nurse practitioners (PNPs) to provide continuity of care before and after transplantation.
A review of pediatric kidney transplant programs reveals that larger programs tend to have dedicated transplant nursing staff, most often serving as a transplant coordinator. Although at least 15 pediatric kidney transplant centers use nurse practitioners, it is still a unique and emerging position in relation to the transplant coordinator role.2 In this article, we discuss the practice of the PNP caring for children requiring kidney transplant and why PNPs are well suited to provide comprehensive care. Specifically, incorporating transplant coordinator activities into the role of the PNP is discussed as a model for providing care throughout the process of kidney transplantation. Unique health care considerations for this population are also addressed.
Children With ESRD and Kidney Transplant
ESRD is still rare in children. Between 800 and 900 kidney transplants occur annually in children in the United States.2 Unlike adults, who are most likely to have their disease progress to ESRD from diabetes, the 4 most common causes of ESRD in children are obstructive uropathy, reflux nephropathy, renal dysplasia, and focal segmental glomerular sclerosis.1 Children with chronic kidney disease and renal failure are prone to specific medical conditions and complications, including metabolic abnormalities, bone disease, anemia, and hypertension. Furthermore, these young children often experience growth failure exacerbated by strict limitations on diet and fluid intake. Growth hormone therapy may be indicated to achieve adequate linear height and weight for transplantation. Placement of a gastrostomy tube is often essential before transplant for administration of fluids, enteral feedings, and medications. Central catheters are also a necessity for young transplant patients, and the PNP can oversee selection of the appropriate catheter type and management of the device. All young people with ESRD are prone to infections such as pneumonia and urinary tract infection.3 Because many pediatric pretransplant patients have urological causes of ESRD, close intervention and follow-up are essential.
It is well known that patients who have had ESRD, including children and adolescents, have increased cardiovascular morbidity and mortality from uremic vasculopathy and cardiomyopathy.4 In reality, young adults with kidney failure have cardiovascular-related mortality rates higher than those in elderly persons, which leads to a reduction in life expectancy. Even after transplantation, the risk for adverse cardiovascular events is higher than the risk in the general population, and PNPs can play a role in helping modify their patients risk through close monitoring of patients' blood pressure, cholesterol level, and weight. Transplant recipients are at greater risk for infections and getting certain types of cancers in adulthood and thus require close surveillance. Transplant PNPs are in a unique position to expand the care for these patients by assuming the role of clinician, educator, administrator, and coordinator.
In the United States, 10762 kidney transplants have been performed on children, as documented by the North American Pediatric Renal Transplant Cooperative Society.5 Children younger than 18 years of age make up approximately 3% of the patients actively waiting for deceased donor kidney transplants. In 2005, the United Network for Organ Sharing (UNOS) revised its guidelines for organ allocation with respect to pediatric priority. This decision was made in response to several factors: children on dialysis for a prolonged period have worse outcomes than adults have, are unable to attend school or participate in activities, and have more technical problems with dialysis catheters.6 Pediatric patients are given priority for deceased donors under the age of 35. These changes in the rules have decreased the wait times for children. Since this change was implemented, more children have received kidney transplants from deceased donors. Concerns have surfaced because pediatric patients are receiving less well-matched kidneys and in turn are having higher rates of rejection and thus higher rates of allograft failure. Further research on this topic is necessary to answer these questions.
Pediatric Kidney Transplant Centers in the United States
According to data from the Scientific Registry of Transplant Recipients, a total of 1 14 programs in the United States have performed kidney transplant for patients less than 18 years of age. Most programs are relatively small- 54% of these programs performed fewer than 5 pediatric kidney transplants annually. The 15 largest programs in the United States performed kidney transplants for at least 16 children per year.2 Children with ESRD require high-level medical care at tertiary centers. Large medical centers are often at universities with teaching hospitals, and much of the care at transplant centers involves clinicians in training. Certainly, advantages exist in centers with this model. One negative aspect can be that patients are often seeing and being cared for by different providers. Gallagher and Kane7 discussed the advantage of using nurse practitioners to provide care for transplant patients, because nurse practitioners are not only able to provide expertise and knowledge to resident physicians but can serve as the constant in an ever-changing academic medical center.
Roles and Regulations
Medical centers performing transplants are required to adhere to the bylaws of UNOS (Table 1) and the Centers for Medicare and Medicaid Services (CMS, 2007 Conditions of Participation: Requirements for Transplant Centers8). CMS requirements state that the daily multidisciplinary team rounds be composed of individuals from medicine, nursing, nutrition, social service, transplant coordination, and pharmacology. CMS mandates nursing participation in multidisciplinary planning and the designation of a clinical transplant coordinator with primary responsibility for coordinating clinical aspects of transplant care, including continuity of care for patients and living donors throughout transplantation and donation.9 Both CMS and UNOS state that the transplant coordinator should be a registered nurse or licensed clinician. Hospitals performing kidney transplants are required to show evidence of nurses' involvement throughout the transplant process when representatives from CMS and UNOS visit.
The role of nurses in transplant medicine is well established in the literature. McNatt10 published a review of the wide variation in the roles and duties of transplant coordinators, who may or may not be advanced practice nurses. She found a lack of clear guidelines about educational preparedness and licensure, with little consistency among these roles, and she reported that boundaries between transplant coordinators and advanced practice nurses are often blurred in the field of kidney transplantation. She noted that the practice of the transplant coordinator is autonomous, and she questioned whether transplant coordinators are sometimes functioning beyond their legal scope of practice. Gallagher and Kane7 recently described the role of a nurse practitioner for inpatients undergoing solid organ transplant. Their article elucidated a positive and effective model for the medical management of kidney and liver donors and recipients.
Although various staffing models are used, in a traditional model, a registered nurse functions as a transplant coordinator performing the duties listed in Table 1 . The traditional role of a PNP includes diagnosing medical conditions, prescribing medications, educating patients, ordering tests, and monitoring therapies. However, the PNP role is often and appropriately expanded to that of researcher, liaison among specialists, and consultant.3 Morse' illustrated the value of having the advanced practice nurse provide care throughout the process of heart transplantation. She described the ideal educational background for a transplant advanced practice nurse as similar to those of a clinical nurse specialist and a nurse practitioner while also serving as a public educator, supervisor, consultant, and researcher.'
Pediatric Kidney Transplant Program at the University of California, San Francisco
The pediatric kidney transplant program at the University of California, San Francisco, averages approximately 26 transplants per year, making it one of the largest programs in the United States. The medical team on the pediatric nephrology service is made up of pediatric nephrologists and nephrology fellows. Two PNPs work 4 days per week. The team is rounded out by a designated clinical social worker and a registered dietitian. The surgical team consists of transplant surgeons who perform kidney, liver, small bowel, and pancreas transplants in children and adults. Financial counselors provide counseling to patients' families before and after transplant.
A dedicated living donor team of transplant nephrologists and coordinators and a living donor social worker evaluate the adult living donor candidates for pediatric recipients. Having a separate team ensures the long-term health and best interests are considered separately from the child or adolescent who is in need of a transplant. Adult transplant coordinators provide transplant procurement call for both pediatric and adult patients. The referral base is a large geographic area in Northern California. The Bay Area has approximately 7 million people. Although most patients receive their general nephrology care at the University of California, San Francisco, before transplant, approximately 45% of pediatric patients are referred from other centers that do not perform pediatric kidney transplants. Out-of-state and international referrals are done on a case-by-case basis.
The pretransplant evaluation is comparable for adults and children. The nurse may assume the role of a clinical transplant coordinator, PNP, or clinical nurse specialist. Our model is unique in that we are involved in the care of pediatric kidney transplant patients from the time of referral until their care is transferred to the adult nephrologists. The PNP and the rest of the pediatric kidney transplant team evaluate the patient. This process includes managing their pretransplant workup, listing, and referring potential donor candidates for evaluation. As opposed to a model that would separate nursing roles before and after transplantation, in this model, the PNP can evaluate patients, fulfill listing and regulatory duties, follow up patients through the waiting period and intraoperatively, facilitate discharge, coordinate care, and manage patients after hospitalization.
Although the attending nephrologist and surgeon have the ultimate responsibility for major treatment decisions after transplant, they rely heavily on the input and expertise from the team, and central to this is the PNP. The relationship between the nephrologist and the PNP is that of professional colleague and allows for notable independence in practice.12 It has long been recognized that a multidisciplinary team approach involving the surgeon, transplant nephrologist, advanced practice nurse, social worker, dietitian, and financial counselor provides the best care for this diverse and complex population of patients. This team model enables the child and his or her family to benefit from shared expertise.
Evaluations are completed by all providers, nurses, social workers, nutrition specialists, and members of the medical and surgical teams. The PNP provides education on listing and UNOS status, types and indications for transplant, preoperative and postoperative routine, and outpatient care. Each member highlights his or her area of expertise in addition to discussing the additional value of living donor transplantation and the necessity of compliance with clinic, followup, dietary guidelines and most importantly, the ability to take medications. The team strives to present a cohesive and holistic approach while providing familycentered care. The PNP adds a synoptic view of the transplant experience from the time the patient is admitted to the hospital until their family life begins to normalize several months later. It is vital to assess the patient's readiness for transplant, not only medically but also psychologically, continually. The PNP is available to assist in the medical management of the child awaiting transplant, including formulating modified immunization schedules, starting growth hormone therapy, and placing gastrostomy tubes to promote weight gain. All referrals are prescreened by the PNP to ensure that patients whose disease is rapidly progressing toward dialysis are given high priority and inappropriate referrals are deferred.
The PNP maintains the deceased donor list and activates patients for transplant when patients are both medically and socially ready. This step weighs heavily on the success of the transplant. A goal across the board is to perform transplantation preemptively whenever possible, thus avoiding dialysis and its multitude of complications. Once insurance authorization is obtained, and the patient is activated for transplantation, the PNP provides extensive education or a 'refresher course' to prepare the patient and the patient's family for hospitalization, immunosuppression, length of hospital stay, potential complications, and the proposed outpatient visit schedule. A formal pediatric selection committee approves candidates for wait-listing and transplantation. This multidisciplinary team meeting, chaired by the PNP, allows for input from all members of the pediatric kidney transplant team. The goal is have team consensus regarding a patient and family's readiness for transplant before activation on the deceased donor transplant list or scheduling for a living-related transplant.
During hospitalization for the transplant, the child is cared for by a team of pediatric specialists and the kidney transplant surgical team. Daily transplant rounds include an attending pediatric nephrologist, pediatric nephrology fellow, pediatric residents, an inpatient dietician, nephrology social worker, pediatric pharmacists, and a nephrology clinical nurse specialist. Child life specialists provide child-centered education on the surgery, incisions, and pain, and they address concerns or fears the child may have. At the time of transplant, the PNP assembles an immunosuppression regimen and tapering schedule for the pharmacists and medical staff. The immunosuppression plan is developed before the transplant and is based on the results of immunogenetic testing, age of the patient, type of transplant, and history of previous transplants. The PNP develops an individualized outpatient plan that includes outpatient visits for 6 months, the surveillance biopsy schedule, and home care instructions that include specific symptoms and reasons to call the PNP or on-call physician. The PNP is in daily communication with the inpatient team regarding readiness for discharge or posttransplant complications that require intervention. However, at our center, the focus of our PNP practice is the pretransplant workup and the outpatient followup care of pediatric kidney transplant recipients.
As with the pretransplant phase, the pediatric kidney transplant recipient is managed in the ambulatory setting by the multidisciplinary transplant team. Patient care management by the transplant PNP consists of the following broad areas: (1) coordination of care, (2) documentation of history and physical examination, (3) ordering diagnostic tests, and (4) treatment interventions. The PNP performs the initial outpatient visits, making use of the PNP' s expertise in educating patients and coordinating care. Although children and their families receive transplant education during their inpatient hospital stay, the process must continue after discharge. Many aspects of hospitalization interfere with a family's ability to learn and retain pertinent information about transplants. Parents are often sleep deprived; children and teens are affected by pain and the side effects of new medications. During the first clinic visits, the PNP provides an extensive review ofd all the patient's medications, fluid and blood pressure monitoring, and the follow-up schedule.
Coordination of care is particularly important for very young transplant recipients, who often require enteral feedings, central catheter care, and compounded suspension of their immunosuppression medications. Ongoing medical management of pediatric kidney transplant patients is provided by the attending nephrologists, nurse practitioners, and pediatric nephrology fellows. The clinician seeing the patient obtains a focused history and physical examination, reviews medications and diagnostic tests, and formulates a plan of care that is reviewed with the entire transplant team during a postclinic conference. This conference provides the opportunity for the plan of care to be communicated to the team. The patient care discussions allow us to learn from each other's unique roles and expertise- and ultimately result in improved outcomes.
The continuity of care provided by the nurse practitioner is beneficial for the patient's family and for the transplant and referring nephrologists. Unlike children with other chronic conditions, pediatric transplant recipients have frequent outpatient visits. Because of the additional risk associated with performing transplantation on small children, these patients are seen often after transplant. Eventually patients with stable allograft function often have laboratory tests and/or clinic visits every 6 to 8 weeks throughout childhood and the pubertal years. Therefore, these patients require long-term care for many years, through the transition to adulthood. In almost all cases, followup care is performed at the transplant center for the first 3 months after transplantation. Depending on the comfort level of the referring provider and the patient's family, the patient may return to the clinic for alternating visits after 3 to 6 months.
In transplant medicine, nurse practitioners are able to function as independent practitioners and well as collaborators.7 Nurse practitioners can contribute special knowledge to collaborative care. Children with kidney transplants have special health care needs, which must also focus on prevention, maintenance, and restoration. There are definite strengths in the independent functions of nurse practitioners, particularly in regard to enhancing timely delivery of patient care. Prescriptive authority is a key example. Pediatric kidney transplant patients have complex lengthy medication regimens that require frequent dose changes and often prior authorization. Infants and preschoolage patients require many of their medications to be compounded and administered via a gastric feeding tube. In California, a registered nurse is not permitted to refill medications. PNPs prescribe medications, adjust dosages in response to results of diagnostic tests and patients' symptoms, and process refill requests and previous authorization requests. The focus on outpatient care allows PNPs to be available for patients' calls, and requests are handled in a timely manner and not dependent on an attending nephrologist who is covering the inpatient unit or seeing dialysis patients.
A primary responsibility after transplant is monitoring for posttransplant complications and side effects. An example of this is the management of febrile infections of the urinary tract, which occur in 15% to 33% of children after kidney transplant and can lead to scarring and interstitial injury and can diminish long-term graft survival.13 Patients with febrile urinary tract infection are treated aggressively with antibiotics. PNPs monitor initial and follow-up cultures to make sure that the choice of urinary prophylaxis is appropriate and to ensure frequent voiding or urinary catheterization. If the patient has recurrent infections of the urinary tract, PNPs will initiate a referral to a pediatric urologist for further care. Our goal as kidney transplant PNPs is not to have as independent a role as possible but rather to facilitate safe and effective care for these patients.
Communication With Outside Providers
Because of the small numbers of children with ESRD, ample referrals are crucial to maintain a pediatric transplant program. Therefore, it is essential to have frequent and open communication with referring providers. Patients who are not yet ready for transplant are seen annually at the University of California, San Francisco. Those patients living at greater distances are seen at quarterly outreach visits to a referring children's hospital. In terms of the posttransplant care, alternating posttransplant follow-up between referring hospital and transplant center allows patients to be seen locally by their nephrologist and to maintain contact with the transplant center. This model ensures that the patient is monitored by the transplant team and complications are quickly identified and treated.14 In 2003, Adedoyin et al14 suggested that pediatric patients could be safely and effectively managed at their referring center after transplant and that alternating visits creates confusion for their families. In our experience, it is the referring nephrologists' goal to manage their nephrology patients after transplant, with the transplant center available for both ongoing consultation and inpatient care should the patient require therapies not available at the referring hospital. This model of 'shared or cooperative care' between the transplant center and the referring center requires maintaining frequent communication between clinicians caring for these patients.
As nurse practitioners providing ongoing medical management of pediatric transplant patients, we are able to provide consultation with referring providers to establish a plan of care in a timely manner without the need to routinely obtain validation from the attending transplant nephrologist. This arrangement allows patients with stable allografts who live a considerable distance to avoid the final and social burden of frequent visits to our transplant clinic. Table 2 shows the PNP responsibilities for outreach to referring clinics.
Transplant continues to be a highly regulated and scrutinized specialty. PNPs manage the regulatory responsibilities defined by UNOS and CMS while providing a strong clinical presence and partnership with the pediatric nephrologist. Further research is needed to build evidence on the effectiveness of PNPs in the care of pediatric kidney transplant patients and improving patients' outcomes in regional transplant centers. From our experience, we believe that the PNP' s role is that of a partner, complementing the duties of the pediatric nephrologist. We provide comprehensive care, an effective and timely service, to often medically fragile patients.
1. Shapiro R, Sarwal MM. Pediatric kidney transplantation. Pediatr Clin NAm. 2010;57(2):393-400.
2. Scientific Registry of Transplant Recipients 2009 Annual Report: US Hospitals with Kidney Transplant Centers. http://www.srtr.org/csr/current/Centers/TransplantCenters _New201 106x.aspx?organcode=KI. Accessed July 26, 201 1 .
3. Martin RK. Organ transplantation: the role of the acute care nurse practitioner across the spectrum of health care. AACN Clinical Issues. 1999;10(2):285-292.
4. Filler G. Challenges in pediatric transplantation: the impact of chronic kidney disease and cardiovascular risk factors on long-term outcomes and recommended management strategies. Pediatr Transplant. 2011;15(1):25-31.
5 . North American Pediatric Renal Transplant Cooperative Society . https://web.emmes.com/study/ped. Accessed August 9, 201 1 .
6. Agarwal S, Oak N, Siddique J, Harland RC, Abbo ED. Changes in pediatric renal transplantation after implementation of the revised deceased donor kidney allocation policy. Am J Transplant. 2009;9(5): 1237-1242.
7. Gallagher LM, Kane KD. NPs in transplant medicine. Expert providers, facilitators, and collaborators. Adv Nurse Pract 2010;18(7):25-26,48.
8. Centers for Medicare and Medicaid Services. 42 CFR Parts 405,482, 488, and 498 Medicare Program. Hospital Conditions of Participation: Requirements for Approval and ReApproval of Transplant Centers to Perform Organ Transplants; Final Rule. 2007. http://www.cms.gov /CertificationandComplianc/Downloads/Transplantfinal .pdf. Accessed July 29, 2011.
9. United Network for Organ Sharing. Designated Transplant Program Criteria. 2011. http://www.unos.org/docs/Appendix _B_AttachI_XIII.pdf. Accessed July 16, 2011.
10. McNatt GE. Nursing and transplant coordination: a call for clarity. Prog Transplant. 2008;18(3):208-215.
11. Morse CJ. Advance practice nursing in heart transplantation. Prog Cardiovasc Nurs. 2001;16(l):21-24, 38.
12. Bolton WK. Nephrology nurse practitioners in a collaborative care model. Am J Kidney Dis. 1998;31(5):786-793.
13. Ulrike J, Kemper MJ. Urinary tract infections in children after renal transplantation. Pediatr Nephrol. 2009;24(6): 1 129-1 136.
14. Adedoyin O, Frank R, Vento S, Vergara M, Gauthier B, Trachtman H. Outcomes after renal transplantation in children: results of follow-up by nephrologists in a primary referral center. Pediatr Transplant. 2003;7(6):479-483.
Jessica Brennen, rn, msn, CNS, CPNP, Marilyn McEnhill, RN, MSN, PNP-BC
University of California, San Francisco
Corresponding author: Jessica Brennan,
rn, msn, CNS, CPNP, University of California,
San Francisco Medical Center,
533 Parnassus Ave, U585,
San Francisco, CA 94143 (e-mail: essica.brennan @ ucsfmedctr.org)
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