Transition of Adolescents with Chronic Kidney Disease from Pediatric to Adult Care Centers

Abstract

Transition of care of adolescents and young adults (AYA) with chronic illness from pediatrics to adult care has been recognized as an essential part of the patient’s care. Transition is a process that starts in early adolescence and prepares the AYA to use the medical care system and take care of their own medical needs independently to ensure continuity of care and improve outcomes. This chapter focuses on transition of AYA with chronic kidney disease (CKD) and kidney transplant recipients. It includes transition definition, relevant developmental aspects in adolescence and the impact of CKD on the adolescent development, the transition process, and the essential components of a successful transition.

1. Introduction

There has been a significant improvement in patient survival in pediatric patients with end-stage kidney disease and kidney transplant recipients. While survival rate has increased, the prevalence of major various morbidities in those children including cardiovascular and other comorbidities remains high [1, 2]. During adolescence, high-risk behaviors include substance abuse and non-adherence peak [3]. Adult clinics are facing an increased number of adolescents and young adults with serious morbidities who either get transitioned or are referred to establish care. This can be challenging to both adult care facilities and the adolescents themselves. Unlike in the adult setting where the patient is expected to be the sole advocate for their care and is expected to comprehend robust instructions, and make their own medical decision, in the pediatric setting patients are under the care of their family or guardians who make the medical decision and take the responsibility for all aspects of the patient’s care. The patient and their families are usually very well known to the pediatric provider who in many instances has been taking care of the patient since birth. In addition, the pediatric providers’ patient load is much less than that of adult providers. Transition of care to the adult setting can be detrimental, particularly to the patient with kidney transplant. Studies suggest an increased risk of graft loss after transitioning to adult care, mainly due to non-adherence [4, 5]. Non-adherence stems from increased risk behavior in the adolescent and the accompanying lack of ability to assess, or even believe in the consequences of risky behaviors. Other challenges of transition of care include lapses in medical insurance. Lack of continuity of care may have negative economic consequences due to increase in cost such as when treating graft rejection or when having to start dialysis after graft loss. In one Canadian study that analyzed the benefits of a transfer clinic, attendance at a single kidney transplant transfer clinic was associated with improved adherence and renal function the year following transfer to adult care [6]. Another study indicated improved allograft and patient survival post-transfer of care in addition to improved health care cost [7].

2. Transition definition and goals

The concept of transition began to develop in the 1990s and is defined as the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented heath care system” [8]. A consensus policy statement on health care transition approved by the boards of the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine defined the goal of transition “as is to maximize lifelong functioning and potential through the provision of high quality, developmentally appropriate heath care services that continue uninterrupted as the individual moves from adolescence to adulthood” [9, 10].

Transition is an organized process that facilitates transition preparation and integration into adult-centered health care. It focuses on the adolescent patient with the goal of educating, empowering, and promoting autonomy and independence in the patient so they can manage their own health care needs and effectively use health care services, whereas “Transfer” is the event of leaving pediatric care to adult care facilities, preferably happening at the end of a successful transition.

For the transition process to be successful, it has to take into account the patient’s developmental status and the cultural beliefs of the family. The transition plan should be individualized to each patient and family.

3. Adolescent development and effects of CKD

Adolescents go through physical, social, emotional, cognitive, and moral developmental changes. Adolescence is a period of separation from parents, identity formation, and autonomy. Adolescents transit from concrete to abstract thinking. There are multiple and complex factors including genetic and environmental factors that play a role in the expression of the individual’s biology and behavior [11]. Environmental factors include family, school, and peers. Cultural factors also define the norm. All those interactive factors result in variation in the adolescent development making it challenging to determine what is “normal” and difficult to define when it starts and when it ends [12].

In general, adolescence is divided into three stages: early adolescence (11–14) years of age, middle adolescence (15–17) years, and late adolescence 18–21 years. Early adolescence is characterized by marked physical changes and concrete thinking where the adolescent will know the right from the wrong. In early adolescence, the adolescent is focused on peer acceptance, which renders the adolescence to be susceptible to peer pressure, whereas during late adolescence, self-ID and autonomy solidify [13]. One of the main psychological developments in adolescence is the development of self-image. Accepting self-image and feeling normal are crucial and are linked to the sense of belonging and acceptance. Chronic illness can have a tremendous toll on self-image. Feeling different from peers may lead to high-risk and rebellious behavior such as non-adherence with medications, difficulties in relationships, depression, poor academic performance, and substance abuse. Reassurance and acceptance from the family and care givers are crucial. The care givers and family should be keen in providing this, and should encourage the adolescent, and compliment them on their achievement and their good behavior to increase their self-esteem and sense of belonging. The physician should use open-ended questions to gain insight into the adolescent’s understanding of health, adherence, high-risk behaviors, and self-esteem. Assessment of high-risk behavior in AYA with chronic kidney disease and renal failure where substance use is prevalent is an essential component of the transition process [14].

During adolescence, ongoing brain development takes place and parallels the cognitive development. Structural brain images show significant increases in the white matter that continues into early twenties. The process of myelination occurs in a caudal to rostral (back to front) matter. Prefrontal areas mature last. The prefrontal area is involved in cognitive control, regulation of emotions and decision making, and weighing risks and benefits is one of the last areas to mature [15].

Brain images and neurocognitive studies showed that children with CKD and end stage-renal disease (ESRD) have brain abnormalities and neuro-cognitive deficits despite the advances in management of CKD [16]. Several systematic reviews examined neuroimaging and described the neurological complications in patients with CKD in adults [17, 18, 19]. One systematic review of structural and functional neuroimaging findings in children and adults included 43 studies, 13 of which were on children described clear trends. Those fundings include cerebral atrophy, brain vascular and white matter abnormalities, cerebral and cortical infarction, and similarities in regional cerebral blood flow between patients with CKD and those with affective disorders [20].

In a study from Helsinki University Central hospital, the neurophysical profile of 45 children with kidney transplant was assessed and compared to a control group of matched for age, sex, and maternal education. They concluded that children with kidney transplant exhibited impairment in receptive language and visuospatial functions and in recognizing emotional states [21].

In addition to all the above challenges, pediatric patients with CKD, dialysis, and transplant miss a lot of school days due to the demand of their chronic illness.

Physicians and transition champions should take all the aforesaid patient challenges into consideration. Transition should be developmentally appropriate and individualized to each patient and family and should consider the cultural expectations and norms for each patient and family.

4. The transition process and elements

The goal of transition of the adolescents is to continue to receive high quality and uninterrupted care as they transit to adults. This can only take place if the AYA are well prepared for that. They should have good understanding of their illness and have the skills to manage their own medical condition and general health independently. They also should have medical insurance coverage to allow them to be followed in adult facilities.

Based on the On TRAC Model principles, transition is best managed by the existing subspeciality team who are familiar with the patient’s condition and know patient and family well, and in whom the family and patients have established trust. Transitioning can be integrated into the patient’s follow-up visits [19]. So pediatric care providers should take the lead on transitioning their patients.

During transition, preparing the adolescent with the goal to acquire the right skills and knowledge takes place. Collaboration and communication with the adult care providers are an integral part of the transition process and should take place one year prior to the patient’s transfer.

Transition is a gradual process that should start in early adolescence and continue to be carried out till the patient is ready for transfer. The concept should be introduced to the family in early adolescent years (12–14) where the transition policy is shared with the patient and family. A clear plan should be developed for each patient and should be agreed upon by the family and the care givers. Since multiple aspects of the adolescent care should be addressed, a multidisciplinary team should be involved in the transition process including the care provider, nurse, social worker, and dietician, and when possible, a pharmacist and a psychologist. Collaboration with gynecologists and urologist to offer contraception and urology care facilitates providing comprehensive medical needs to the adolescent. From the multidisciplinary team, a designated transition person should be identified. In the consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA), it is stated that it is essential to identify a champion in both the adult and pediatric clinics to coordinate and educate on transitional issues. In their statement, they published the essential components of transition [22]. The identified champion should have special interest in organizing and leading the transition process. In addition, transition should include parents, other family members, and boyfriends/girlfriends.

The transition team should have an agreed upon transition policy that the transition team is familiar with and should be shared with the patient and family at the start of the transition process.

After introducing the concept to the patient and family, the transition process should start by assessment of transition readiness. It is best to use existing and validated transition check lists such as the TRAQ [23] and STARx Questionnaire [24]. The readiness assessment questionnaire should be comprehensive and should have questions that can assess patient’s understanding of their illness, knowledge of their medications, assessment of adherence and consequences of non-adherence to mediations, and in dialysis patients, consequences on non-adherence to dialysis. For children over the age of 12 years, it should include assessment of high-risk behaviors such as alcohol and drug use, smoking, sexuality, reproductive health, educational/vocational needs, their understanding of health maintenance, support system, understanding of the health care system, knowledge about diet, emergency handling, readiness for independence and self-reliance, and health insurance coverage. This will serve as a starting point for the patient and the family. The information given about transition should be given in a gradual manner appropriate to the developmental stage and intellectual ability of the patient [22].

Ongoing evaluation and tracking of transition readiness is an important component of the transition process as it identifies deficiencies and allows for tailoring the plan to each individual’s needs during the transition process [25, 26]. An individualized jointly developed goals and action plan with the youth should be documented and shared with each patient at the end of each assessment. Tracking the transition progress of each patient requires the use of individual flow sheets or registry to facilitate tracking and ease follow-up on progress. During transition, and in late adolescence, the adolescent and young adult, and while getting on going education, are coached and given the opportunity to practice supervised self-reliance such as scheduling and attending visits on their own, refilling their medications, and communicating their concerns with the health care provider and making decisions.

At least 1 year prior to transfer, communication with the adult clinic should start. During this year, insurance issues should be sorted out and the patient should be provided with a written medical summary. The patient should have an appointment with an identified adult care provider who has previous knowledge of the patient’s arrival and condition, and the clinic should be expecting and ready to receive a young adult.

The adult clinic receiving the young adult they should have a transition plan. A transition point person should identify the young adults in clinic, receive them, and introduce them to the adult care facility and the multi-disciplinary team. The adult clinic should also communicate with the pediatric providers acknowledging receiving the patient and the transfer package.

While it is agreed on that the timing to initiate transition planning is early adolescence, the time of transfer and integration into adult care varies. Some pediatric programs follow the adolescent and the young adult till 21 years, while others transfer at 18 years. Regardless of patient age, transfer should not take place during crisis or if the patient’s condition is unstable.

There are different transitioning models for the last year. One model is to have a dedicated joint transition clinic between pediatric and adult programs the year preceding the transfer. A joint clinic allows the transitioning adolescent to meet with the adult provider and opens the door for open communication between the pediatric and adult teams. Use of a dedicated transfer/transition clinic in adolescents and young adult kidney transplant patients has been shown to be associated with improved adherence and renal function in the year following transfer [6], and with better patient satisfaction and the lower changes in medication and care [27].

The dedicated transfer clinic can be located either in the pediatric or in the adult care center.

The other model of transitioning the year preceding the transfer particularly if it is not possible for the patient to attend the joint transfer/transition clinic such as when the patient is transferring care to a private provider is to give the transitioning patient the opportunity to see the adult provider while still being followed by the pediatric team. The patient can have alternate visits between the two providers or can be seen several times in the adult care clinic before transferring care.

A very useful online tool for transition can be found on “gottransition.org.” On that website, they provide tools in both English and Spanish. They describe the six elements of transition on both the pediatric and adult sides and recommend a quality improvement approach to implement the six core elements. The six core elements include transition policy, tracking and monitoring, transition readiness, transition plan, transfer of care, and transfer completion.

1. Transition plan: Develop a written and agree upon transition policy and plan.

2. Tracking and monitoring:

   Use individual flow sheets and registry and when possible, use electronic health records to track the youth’s transition progress with the six core elements

3. Transition readiness:

   Assess self-care needs and offer education on identified needs, and develop the plan jointly with the youth and parent/care giver document regularly in a plan of care.

4. Transition planning:

   Develop a health care transition plan with a medical summary for each patient.

5. Transfer of care:

   In this step, transfer to adult care practice takes place. Transfer should only happen when the patient’s condition is stable. Here, the pediatric provider should prepare a letter with the transfer package and send them to adult practice, confirm the date of the first adult provider appointment, and complete transfer package, including final transition readiness assessment, plan of care with transition goals and pending action, medical summary, and emergency care plan. The pediatric provider should confirm receipt of the transfer package and should remain responsible for the patient’s care until the young adult is seen by the adult care provider.

6. Transfer completion:

The pediatric provider confirms that the transfer is complete and elicits feedback.

5. How well are the transition principles implemented?

The process of transition requires a team effort, time, and dedication which makes it challenging to implement. In 2013, a survey of 15 European dialysis sites found suboptimal awareness of the ISN/IPA consensus statement guidelines [28]. In a survey of pediatric nephrologists across the United States where the response rate of nephrologist was 40%, 60/150, and the response rate of centers was 56%, 49/87 centers, it was found that the elements of transition were not widely followed [29]. For the question of having a transition clinic, only 23% of the responses were positive, and only 37% of the responses were positive for having a transition summary. Only 25% had a designated transition coordinator and involved adult care takers 1 year prior to transfer. The authors designed the “RISE” to transition protocol for renal transplant patients based on essential elements for a successful transition. The protocol has four competency areas including Recognition of the disease process and the health care system, Insight into the short- and long-term impact of the disease, nonadherence and emotional needs, Self-reliance in scheduling and attending appointments, refilling medications and identifying urgent changes to their health, and Establish healthy life choices, adherence to medications, follow-up, psychological skills, and educational and vocational goals [29].

In Europe, a survey on behalf of the European Society of Pediatric Nephrology (ESPN) working group “transplantation” on the management of transition and transfer to adult care in pediatric kidney transplant recipients that involved 39 centers from 24 countries accounting for 2500 children found that the IPNA and ISN guidelines were insufficiently implemented in Europe [30].

6. Conclusion

Transition from pediatric to adult care facilities in patients with CKD or patients who have received a kidney transplant remains an essential process to ensure access to care and promote outcomes. Pediatric nephrologists, with their multidisciplinary care team and a designated transition champion, lead this process that starts in the early adolescent period and ends with transfer of care. Transitioning requires the use of validated and comprehensive readiness assessment questionnaires, use of flow sheets, or the electronic health record for tracking and the collaboration and communication with the adult care providers. Transition results in improved patient satisfaction, and most studies showed improved outcomes and even cost effectiveness. Despite that, transition of care remains poorly implemented mainly due to poorly allocated time and resources. Pediatric nephrologists need to advocate for transitioning their patients.