Pediatric Renal Transplantation: Focus on Current Transition Care and Proposal of the “RISE to Transition” Protocol

Background

SYSTEMATIC REVIEW:

A review of the existing literature was done for studies on current transition practices and tools used in the transition of renal transplant children from pediatric to adult nephrology/transplant services. Only studies that focused on transition care practices, transition care interventions, and their effects on long-term renal graft survival and outcome were included in the review, which followed PRISMA guidelines (Supplementary Table 1). A PubMed/Medline search was performed using the search string “transition care in pediatric renal transplantation”. Two independent reviewers extracted the data with regards to type of study, number of subjects in the study, interventions/tools used in the transition process, outcomes, and recommendations. Any differences in reviewer data extraction was resolved by reaching consensus or involving a third reviewer if necessary.

SURVEY OF TRANSITION CARE PROBLEMS:

We designed a survey, which was administered to various nephrologists across the United States to assess the current state of transition care in pediatric transplant nephrology. We distributed a 17-question survey in order to gain the most information while still being simple and quick for practitioners to respond to (Table 1). The survey was distributed to 150 nephrologists in 87 centers across the country via SurveyMonkey (Figure 1). The percentages of “yes” answers for each question were calculated (Table 1). Free-text answers were counted and similar answers were grouped accordingly (Table 1, questions 14–16). The percentages were examined to determine which tools, personnel, and processes were used consistently or inconsistently during the transition process across different practices.

SYSTEMATIC REVIEW RESULTS: With the search string mentioned above, 48 articles returned and were screened for studies about transition care and transition tools/interventions in renal transplant children (Figure 2); 19 were excluded based on title screening, and of the remaining 29 articles, 19 were excluded based on abstract screening. The final 10 articles qualified for full review, and the data were extracted and are summarized in Table 2. Tools and resources used in transition care included: structured transition programs [9]; dedicated transfer/transition clinics to address the needs of at-risk adolescents [10, 11]; administering questionnaires to assess the transition needs and readiness of patients, providers, and parents [12–14]; and monitoring of immunosuppressive drug trough levels to estimate the level of adherence during transition [3]. Questionnaire-based surveys were shown to be helpful tools in assessing the needs and readiness of patients, family members, and healthcare providers [12,14]. Use of dedicated transition/transfer clinics has been shown to improve patient compliance and long-term kidney transplant outcomes [10]. Furthermore, standardized multilevel transition programs involving patients, pediatric nephrologists, nurses, parents, siblings, teachers, social workers, and dieticians have been shown to reduce the rate of decrease in kidney functions and acute rejection episodes [9]. Immunosuppressive drug trough level monitoring can be used to check patient compliance during transition; however, a study has shown that the compliance was not related to transition; rather, adolescent age is a risk factor for non-compliance [3].

SURVEY RESULTS: We received 60 responses from 49 centers (40% response rate) (Figure 1). The vast majority of those surveyed complete 0–5 transitions a year and report 59% of patients complete the process at the time of transfer to adult services. Approximately half begin the transition process at age 16–18 years, while the other half begins the process at age 16 and under. The personnel involved in the transition process vary widely across practices, and only 23% used a dedicated clinic. Sixteen different services were reported as being used (Table 1, question 14), with most common being pediatric nephrologists (40/94), adult nephrologists (34/49), and social workers (27/49). Very few respondents took advantage of psychology, pharmacy, and primary care services. Interestingly, 80% reported the use of a team member proficient in congenital urologic malformation.

Only 33% reported that a written transition plan was given to patients, 37% incorporated healthcare passports into their transition process, and 61% reported that the patient was prepared for future health care, education, financial, and social responsibilities. Only 30% used a standardized assessment of readiness, 23% utilized a transitional care questionnaire, and 39% completed a checklist of some sort indicating achievement of milestones.

Less than 60% of respondents said that practices, protocols, and treatment plans are effectively communicated between adult nephrology and pediatric teams. Only 30% reported extra involvement of the PCP during transition and 25% reported involvement of adult nephrology at least 1 year prior to transition. Another finding was that only 55% reported collaboration with adult teams regarding expectations and clinics.

Discussion

While our sample size is small, this survey still provides some insight into the current state of transition care in the United States. With a response rate of 40% from nephrologists in 49 centers (56% centers surveyed) across the country, we believe we have a representative sample of current nephrology transition practices. Several areas of concern become apparent in our survey results. First, there is considerable variation across practices in personnel involved in the process, use of dedicated clinics, and use of patient-centered tools. Second, there is inconsistent communication between the adult and pediatric teams, as well as with the primary care provider. Third, there is inconsistent use of transition surveys and assessment of readiness, despite evidence that they improve outcomes.

From our literature review, it became apparent that various tools and resources were used during transitioning in order to enhance graft survival. There is evidence that a multidisciplinary team has a positive impact on patient outcomes [9]. Studies have shown that the use of dedicated transition clinics improves long-term patient outcomes and patient satisfaction [9,10]. In contrast, a study found that specialized transition clinics have no positive impact on short-term graft function and survival [11]; however, the same study found that use of these specialized clinics is associated with a high level of patient satisfaction and a small number of medication regimen changes in comparison to the patients transferred to general transplantation clinics and private-practice nephrologists [11]. Questionnaire surveys aid in identifying and addressing deficiencies in transition preparedness, and improve interpersonal communication among all the personnel involved [12,14].

Multidisciplinary teams are also able to help patients in non-medical aspects. Availability of social work, financial assistance personnel, community workers, and other non-medical staff improve the health disparity seen during transition, as well as improving the effectiveness of transition [15–17]. Despite the evidence and the benefit potential, our survey shows that dedicated transition clinics are not widely used at this time. Also, the lack of communication between healthcare teams, patients, and primary care providers is an area of concern. Transplant recipients typically have a complicated care plan that must be continued throughout their lives; therefore, effective communication is a key to success. The use of a dedicated transition clinic can improve communication between teams by having all parties involved in a single clinic. Joint appointments with pediatric and adult teams would help foster bi-directional communication. This will also increase patient contact with the healthcare system by having all services delivered in a single day in one facility. Increased contact has been shown to be part of a successful transfer to adult services [18]. Use of a single clinic would also improve communication with primary care services by acting as a link between transplant teams and primary care offices. The major obstacles to this are the financial burden and the challenges faced in bringing all services under one roof, especially in freestanding children’s hospitals [8].

Currently, there are validated assessments available for use in transition care [19]. There are also several tools available, such as the health care passport and medication adherence assessments, to facilitate the transition process [20]. These tools allow identification of at-risk individuals, and implementation of these assessments will help prevent premature transition and improve long-term outcomes. Our findings suggest the need for a structured transition protocol and the establishment of dedicated transition clinics to optimize care for adolescent and young adult (AYA) transplant recipients. In order to contribute to defining evidence-based guidelines in the future and to address the inconsistencies in healthcare personnel, ineffective communication, and minimal use of transition tools, we have designed the “RISE to transition” protocol for renal transplant recipients.

Transition Protocol: RISE to Transition

TRANSPLANT TRANSITION CLINIC:

The transition clinic, headed by the transition team, will be the central location for the transition process. The goal of the transition clinic is to provide a single area for patients to meet their entire medical team and improve collaboration between pediatric and adult teams. This will be achieved through the use of dedicated personnel and a structured protocol.

KEY TEAMS IN TRANSITION:

There are 5 groups of key players that must work together seamlessly to achieve optimal transition:

TRANSITION TOOLS:

Tools to be utilized in the protocol include:

STAGES OF TRANSITION:

We have divided the entire process of transition into 3 stages depending on the age of the patient and illustrated in Figure 3.

PRE-TRANSITION STAGE (AGE 14–18 YEARS):

The pediatric transplant team will handle the initial preparations for transition. While the official transition process begins at age 18, family-led education should begin as young as age 14. At this time, the pediatric transplant team will initiate use of educational tools with the patient and family (Table 4). They will also encourage families to begin seeking financial, educational, and vocational support for the patient’s future academic/career goals. Early interventions help to enforce healthy skills and independence and foster a sense of normalcy for the adolescents and young adults [23]. During this time, interventions will aim to improve quality of life for transplant recipients by targeting psychosocial aspects of transplant and transition [25,26].

A checklist of tasks will be provided to the pediatric transplant team outlining their responsibilities, which contains the requirements of the RISE protocol (Table 5). The team will create a transition plan in conjunction with the patient and family, which will lay the groundwork for transition by defining milestones to be achieved (Table 3). The transition plan will be given to the patient, family, adult transplant team, and transition team. The pediatric transplant team will also be responsible for providing the patient with an up-to-date medical passport. If not already established, they will also assist the family in finding an adult primary care provider and begin communications.

NEEDS ASSESSMENT:

Once the patient is 18 years of age, the pediatric transplant team will initiate the transition process. A baseline level of readiness will be assessed in the patient and family at the start of transition. These assessments will not only determine the level of need, but also allow for the transition process to be personalized for each patient. Assessments are done using:

ACTIVE TRANSITION: The first visit will always be a combined appointment. The adult transplant team will be brought on by the pediatric and transition teams. During this visit, the pediatric team will provide a written transition plan and the adult team will define their expectations moving forward. The adult transplant team must ensure that the patient has achieved all milestones as defined by the pediatric team prior to transition. This will be accomplished by clinic visits consisting of pediatric transplant, adult transplant, and transition teams at the transition clinic (Table 6).

The adult team will also establish communication with the primary care provider. This key area has been underutilized in the past [27]. Primary care physicians should be involved during active transition in order to facilitate good communication with the patient’s primary point of contact in the healthcare community. Together with family and primary care, the adult team will communicate all guidelines pertaining to the patient’s disease, treatment, complications, impact on daily life, and other areas of impact. The adult team will have their own checklist that must be completed prior to successful transition (Table 7). After the initial visit, the adult team will work with the patient to continue improving competencies in RISE.

The transition team will assist the patient and the pediatric transplant and adult transplant teams with the transition, which is tailored for the patient based on the results of the baseline assessment. The transition team will assess the patient’s progress in the 4 key areas through the use of readiness surveys given to patient, family, and physician. The team acts as the primary conduit between pediatric and adult services and ensures milestones are made and provides a safety net for patients. During the transition period, assessments will be performed every 6 months to establish the patient’s level of readiness. Standardized assessment questionnaires will be used for this aspect of transition. At each visit, patients will also be evaluated for milestone achievements. This will continue until patients have successfully exhibited competency in all 4 areas of RISE and has reached all their milestones.

When the patient is deemed ready to fully transition to adult services, the adult team must communicate with the pediatric team all residual responsibilities prior to the patient’s first appointment. The adult team will also ensure they have obtained all records from the pediatric team and, if needed, have the ability to consult the pediatric team.

ADULT TRANSPLANT TEAM: When the patient is fully ready for transfer (ideally by age 21), the adult team will take over patients care. Prior to this, the adult team will have completed their transition checklist (Table 7), established effective communication with primary care, and ensured the patient is fully competent in all RISE areas.

PEDIATRIC TRANSPLANT TEAM:

When the transition is completed, the pediatric transplant team will remain with the patient until the first adult visit. They will also remain available for consultation by the adult team if the need arises.

TRANSITION TEAM: The transition team will continue to follow the patient into adulthood (Table 8). This is to not only create continuity for the patient and act as a safety net, but also to assess the success of transition and to identify areas for improvement. At 6 months after transition, a combined care teleconference will be conducted between all pediatric and adult services. After 3 consecutive visits to the adult nephrologist, quality outcomes will be evaluated, with further evaluation at 1, 2, 3, and 5 years. This will allow the transition team to perform continuous quality improvement in order to improve the transition experience.

Implementation of the RISE to Transition Protocol at Our Facility

The primary aim of this protocol is to help define evidence-based guidelines for transition in the future. Given the scope of the protocol, secondary goals are validation and improvement of transition tools. We have implemented RISE to transition protocol and the study is ongoing at Akron Children’s Hospital. Seventeen patients (6 females and 11 males) who received a renal transplant (mean age, 14.5 years) in the preceding 2–9 years (mean, 5.6 years, median 7 years) received transition protocols in their clinical visits. We laid down the transition plan incorporating key adult physicians and related services. The final transition will be completed after the patient turns 21 years old. So far, we have successfully transitioned 6/17 patients.

The preliminary assessment suggests that the transition clinic helped give family and/or care givers, as well as the other subspecialists, sufficient time to prepare for the young person to transition from pediatric care to adult care (satisfaction score 90%). Educating the young person and their family about the transition process, kidney condition, healthcare rights, and adult health care environment were identified as the key factors for RISE to transition (90th percentile). Adolescents and parents did not differ significantly in their general views and stated that they would appreciate the support provided by a transition program. However, the parents appreciated the support during transfer significantly more than did the adolescents. Eighty-five percent of patients and family felt generally well-informed about the RISE to transition, but 70% preferred to receive more information about their disease and overall health during their transfer period. When asked for the key person during the transfer, 62% of respondents mentioned the pediatrician, 6% said “others,” and 30% stated that it was the nurses. The relevant issues during transfer were: 35% of respondents cited medication, 27% cited education and employment, 13% cited disease knowledge, and 25% cited the adult service environment. Our study is still ongoing and, when completed, it will serve as a basis for future large-scale studies to validate our protocol and help to develop evidence-based transition guidelines.

Limitations of the Study

Our survey sample size was small, but the study still provides insight into the current state of transition care in the United States. This may not represent the state of transition in other parts of the world. We recognize that there are limitations to our current model. The challenges in implementing the RISE to transition protocol are not realized, as this entails financial burden and mobilization of resources to bring all the services under one roof, especially in freestanding pediatric hospitals. This might be the biggest obstacle in developing countries due to limited resources. Other limitations of the protocol include geographical limitations for patients, physicians, and personnel involved in transition, as well as the time commitment required to complete transition. Our pilot study on implementation of the RISE to transition protocol at our facility is still ongoing and the final results are awaited. The RISE to transition protocol needs to be tested in multicenter and multinational trials before it can be validated for use in the United States and globally.

Conclusions

The transition period is a critical time for pediatric renal transplant patients. This period is complicated by the patient’s psychosocial development and increases the chances of high-risk behavior and non-adherence. The current transition care is non-standardized, inconsistent in tool and personnel usage, and lacks effective communication, despite evidence of their utility. Through the use of dedicated clinics and a structured transition protocol, transition of pediatric renal transplant recipients can be improved. Our RISE to transition protocol focuses on 4 key components for a successful transition: Recognition, Insight, Self-Reliance, and Establishment of healthy habits. The implementation of this protocol aims to improve graft survival, rejection rates, adherence rates, quality of life, and other outcomes. The results of our pilot study may serve as a basis for further research and validation of the RISE to transition protocol, which could contribute to the development of evidence-based transition guidelines for pediatric renal transplant recipients.