Holistic Support: Setting Pediatric Transplant Patients and Families Up for Lifelong Success

Our panel of experts weighs in on how the medical system can support holistic care for pediatric transplant patients of all ages.

What are the key factors that determine a child’s eligibility for a transplant, and how do transplant teams prioritize pediatric patients on waiting lists?

Children can require organ transplants for several different reasons. They may have chronic heart, liver, or kidney disease that has damaged the organ so severely that they need a new one to live a long life. Alternatively, they may have been a healthy child who acutely developed organ failure due to infection, immunologic injury, toxic exposure, or genetic/metabolic disease. Some children require transplants for genetic conditions or anatomic problems they are born with. Others have cancers that can only be cured by removing the organ and putting in a new one. In the United States, all people are placed on an organ waiting list with a score that is designed to capture medical urgency and risk of mortality. The score is derived from objective data.

What recent advancements in pediatric transplant surgery or post-operative care have improved outcomes for children, and what promising innovations are on the horizon?

The field of pediatric transplantation has improved significantly over the last decade, resulting in better short- and long-term outcomes for pediatric recipients. The recognition that transplant recipients need significant multidisciplinary care has led to the development of collaborative teams that include surgeons, medical subspecialists, anesthesiologists, psychosocial experts, and nutrition experts. 

On the medical side, the use of dialysis, therapeutic plasma exchange, and ventricular assist devices have allowed children to remain more stable while awaiting transplant. Improved knowledge of how to fine-tune immunosuppressive medications has minimized the long-term side effects of immunosuppression that were seen historically. On the surgical side, in kidney and liver transplantation, the ability to use living donors has made a huge impact on shortening waitlist times for children in need. Living donors can now undergo robotic surgery, shortening their length of hospital admission, their recovery time, and time away from work. 

Ongoing research to understand the immunology of transplants will continue to result in better immunosuppressive regimens. Research to identify biomarkers (blood or urinary tests) that identify rejection quickly will lead to improved outcomes. Research on genetic predisposition for disease and genetic differences in medication response will lead to personalized approaches for each transplant candidate and recipient. Ultimately, we hope that research will lead to cures for the diseases that currently necessitate transplants.

Pediatric transplant patients and their families face significant emotional and psychological challenges. What strategies or support systems are most effective in helping children and their families navigate the transplant journey?

Psycho-social transplant team members — including psychiatrists, psychologists, social workers, family health navigators, and financial counselors — are critical to the success of transplant candidates and recipients. They help children and their families understand and cope with the many challenges of going through a transplant. Additionally, they can help support families with finances, transportation, housing, and food — things that can be especially challenging for families who must travel far from home to their transplant center.

How can we increase organ donation rates, particularly for pediatric patients, and what role do education and advocacy play in raising awareness about the need for pediatric organ donors?

Sadly, there are not enough deceased organs for all of the adults and children on the waiting list in need of new organs. In the United States, people “opt-in” to being a donor, rather than “opt-out,” or presumed consent, such as exists in many European countries. It is so important for the general public to know that signing up to be an organ donor will never result in first responders providing them with less care should they be in an accident. Organ donation can make something positive come out of something horrible.  

With liver and kidney transplantation, living donation is a way to increase the supply of available organs. In living donation, you take a piece of the liver or the whole kidney out of a living person and place it into a person in need. For the liver, only 20-30% of an adult’s liver is needed to save the life of a child. The liver will grow back to full size in both the donor and recipient in just a few weeks. People don’t need to be related to the recipient to be their donor. In fact, people can offer to be a living donor for a child they’ve never met. It is so important to educate the general public about the opportunity to be a living donor. Many people are looking for a way to make a positive impact on the world, and living donation is a way to save a child’s life and the lives of all their family members and friends!  

Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the long-term medication regimen for pediatric patients, and what are the key challenges in ensuring adherence, especially as children grow into adolescence?

It is critical for children to be on immunosuppressive medications after transplant to prevent their body from rejecting the new organ. Combinations of multiple immunosuppressive medications are used to maximize benefits while minimizing side effects. It is a fine balance of finding the perfect amount of immunosuppression to prevent rejection without causing other problems, like diabetes or high blood pressure. Over time, certain organs develop some tolerance for the new organ and lower levels of immunosuppression can be used. Daily adherence to immunosuppressive medications is critical to both short- and long-term organ survival. As children enter adolescence, they can require additional support from the psycho-social team to understand why it is important to keep taking their medications.

What are some of the key factors that influence the long-term success of pediatric transplants, and how do transplant teams ensure the best possible quality of life for children as they grow and develop post-transplant?

The most important factor in the long-term outcome of the graft is patient adherence to immunosuppression. Transplant teams work closely with their patients and families to prevent non-adherence. At the same time, teams work to minimize immunosuppression as much as possible to maximize cardiovascular, metabolic, renal, and bone health.

What are the key factors that determine a child’s eligibility for a transplant, and how do transplant teams prioritize pediatric patients on waiting lists?

Determining a child’s eligibility for a solid organ transplant includes many factors, such as disease severity, underlying medical conditions, ability to tolerate surgery, immune compatibility with possible donors, age and size (weight and height), nutritional status, psychosocial factors, and ability to adhere to a long-term, complicated post-transplant regimen in partnership with the medical and psychosocial teams. Children awaiting solid organ transplants are supported by multidisciplinary teams — pediatric surgeons and physicians, social workers, dieticians, psychologists, and transplant nurses — to enable them to receive the right organ at the right time. 

Children are prioritized in different ways, based on each solid organ transplant. Children waiting for kidney transplants receive “pediatric priority,” which reduces wait times by allocating kidneys from the healthiest deceased donors with the longest life expectancy to children. 

What recent advancements in pediatric transplant surgery or post-operative care have improved outcomes for children, and what promising innovations are on the horizon?

There have been many advancements that have improved outcomes for children, including: 

• Advancements in methods of organ procurement, which allow children to receive the best-matched organ for each unique individual
• Advancements in immune therapies to best balance the right amount of immunosuppression to maintain long-term organ and child health, while reducing undesired side effects
• Paired exchanges and national kidney registries, which allow children access to a much larger donor organ pool to receive the best-matched kidney and reduce wait times

We also expect future innovations, such as reduced-intensity stem cell/kidney transplants, with the goal of eventually coming off all immunosuppression medications as a result of induced tolerance. 

Pediatric transplant patients and their families face significant emotional and psychological challenges. What strategies or support systems are most effective in helping children and their families navigate the transplant journey?

Caring for a child and their family that is growing and changing is challenging. It involves optimizing care before and after transplant as well as keeping up with their needs related to normal physical, developmental, and psychological childhood and adolescent growth. A strong multidisciplinary care team that includes dedicated transplant psychologists, transplant social workers, in-hospital school teachers, and child life support teams is key. Family and caregiver support groups are also huge pillars of support for our kids.

How can we increase organ donation rates, particularly for pediatric patients, and what role do education and advocacy play in raising awareness about the need for pediatric organ donors?

Education and awareness are key components to increasing the pediatric deceased donor pool. Some key ways to raise awareness include: 

• Family/caregiver-focused education can show families the benefits of transplantation, the donation process, and the role of consent
• Provider/nursing/medical professional-focused education ensures medical teams have effective and informed communication to discuss organ donation at critical times
• Outreach to community organizations, religious communities, et cetera can educate and promote organ donation awareness and need

Another option to increase transplant rates is living donation. Adults who are 18-55 years old and in excellent health can consider becoming a living donor. An adult living donor can donate a kidney or a portion of their liver to a child waiting on the transplant waitlist. Adults can directly donate to a child in need or be a non-directed donor, donating to a child they have never met.

Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the long-term medication regimen for pediatric patients, and what are the key challenges in ensuring adherence, especially as children grow into adolescence?

Managing long-term medications after transplant begins at the very beginning of the transplant journey and is based on a trusting bi-directional relationship between the child and caregivers and their medical team. Childhood and adolescence are times of immense physical and developmental change, so frequent medication changes are expected. Due to challenges associated with adherence and significant life changes during adolescence and young adulthood, solid organ transplant recipients between the ages of 16-24 years old have the highest risk of organ rejection as compared to their peers. 

A multidisciplinary approach to caring for the entire patient during this time — setting in place supports and safety nets — is key to success. Teaching skills to pediatric solid organ transplant recipients to manage long-term medical needs during the transition from childhood to adulthood should be a key focus for pediatric transplant programs and should be done in partnership with adult transplant programs. 

What are some of the key factors that influence the long-term success of pediatric transplants, and how do transplant teams ensure the best possible quality of life for children as they grow and develop post-transplant?

Receiving a solid organ transplant is a life-changing opportunity and responsibility. We focus on supporting each individual patient to allow them to thrive physically and developmentally, and we stress that the relationship with the multidisciplinary transplant team is a lifelong, strong, and important bond. 

Pediatric transplant patients and their families face significant emotional and psychological challenges. What strategies or support systems are most effective in helping children and their families navigate the transplant journey?

Psychosocial support of pediatric transplant patients is critical for supporting the behavioral, emotional, and psychological well-being of patients and families. Our transplant psychology team meets with children and families and engages in clinical assessment and treatment across the heart, liver, and kidney transplant programs during inpatient hospitalizations and procedures as well as outpatient medical clinic settings. 

Partnering with our wellness colleagues and team members — such as social work, family navigators, child life, spiritual care, art therapy, palliative care, and more — ensures comprehensive psychosocial support. For example, wellness providers can help families navigate the logistical burden of transplant, including finances, transportation, employment, school, family stress, housing, and more. Our psychology team meets with all patients at the pre-transplant evaluation as a standard component of our multidisciplinary team to start getting to know them and introducing psychological services. The psychological evaluation includes an assessment of the patient and family in terms of risk and resilience factors that may impact coping with transplant, with a focus on supporting patients and families to maximize successful outcomes across physical, behavioral, emotional, and quality of life aspects. 

We collaborate with our multidisciplinary colleagues on the transplant teams to consider whole-child and family care and conceptualize all aspects of the patient and family to determine the best supports to set them up for success post-transplant. Patients and families continue to meet with the psychology team before, during, and after the transplant through ongoing health and behavior assessments, interventions, and consultations. Our interventions focus on health and behavior aspects, such as coping with illness and transplant; adherence to medical regimens and treatment; patient mental health concerns, such as anxiety and depression associated with illness; and family coping. Interventions may utilize a mix of cognitive behavioral therapy, mindfulness, adherence strategies, acceptance and commitment therapy, relaxation strategies, motivational interviewing, and more depending on the presenting concerns. It is quite common for youth and families facing transplants to experience difficulties coping with illness, challenges associated with extended or frequent hospitalizations, anxiety and depression symptoms, and fears related to their medical journey. By utilizing a proactive preventative care model, we aim to help children and families feel more comfortable meeting with the psychology team, even if they are not experiencing clinically significant symptoms. This helps us identify any concerns early on and implement appropriate interventions. 

We also focus on cultural aspects and consider health disparities in our conceptualization of the patient and family, and we bring our unique expertise and perspectives to the multidisciplinary transplant teams. We conduct caregiver support groups and a variety of additional patient and family educational sessions and experiences focusing on transition to adult healthcare, adolescent and young adult issues, and fostering connections among transplant families. We engage in significant consultation and coordination with the multidisciplinary transplant teams. Being present as a standard component of multidisciplinary transplant care helps normalize psychological health and quality of life to show that they are just as important as physical health. 

Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the long-term medication regimen for pediatric patients, and what are the key challenges in ensuring adherence, especially as children grow into adolescence?

Adolescence is a time of significant change and developmental tasks, including self-identity development and formation, a focus on peers, individuating from caregivers and assuming more autonomy, and changes within the body. All of these can contribute to adherence challenges as adolescents strive to associate more with peers and less with caregivers and prefer to take on tasks themselves. Further, they often want to blend in with their peers and not stand out as different, which can manifest as frustration about taking medication or tending to medical care and trying to lessen the impact of medical care on their lives. All this occurs while the prefrontal cortex of the brain in adolescents is not fully formed. The prefrontal cortex houses executive function skills that are critical to managing a complex post-transplant medication regimen. 

Needless to say, these elements combine to pose potential challenges to adherence. Thus, it is really important for adolescents to have numerous support systems built into their lives to promote adherence and positive post-transplant outcomes. Adherence support is crucial for all adolescents, regardless of their developmental and cognitive level. We tend to encourage caregiver, school, trusted adult, and friend support day-to-day for medication supervision. 

As psychologists, we also focus on adherence during our health and behavior assessments and interventions with patients and families. We first identify barriers to adherence that the patient and family face, as these are the starting points that guide the next interventions. We then work with adolescents and families to implement health and behavior interventions and strategies for adherence, such as supervision, alarms, pillboxes, and additional reminder systems. Additional factors that impact adherence include mental health; substance use; level of family and friend support; systemic, logistical, and financial barriers; health disparities; and more. Adherence is one of the primary components of post-transplant care that we address as psychologists, and by identifying and addressing some of the barriers to adherence, we collaborate with patients and families to optimize adherence to medications and medical care so children continue thriving with their transplants.

What are some of the key factors that influence the long-term success of pediatric transplants, and how do transplant teams ensure the best possible quality of life for children as they grow and develop post-transplant?

As medical advancements have developed and greatly improved medical outcomes for transplant candidates, we have focused on how psychological and quality-of-life factors may impact long-term success. By conducting a comprehensive psychological evaluation pre-transplant, we aim to highlight a patient and family’s unique resilience factors and provide support for areas of challenge or risk. 

There are numerous psychological factors that have been demonstrated to correlate with successful physical health and psychological health outcomes post-transplant. Illness factors include the patient and family’s knowledge and understanding of the medical illness and transplant as well as overall motivation to move forward with the transplant. Treatment adherence — including adherence to medications, medical appointments, and any additional risk factors for adherence (e.g. cognitive factors such as attention problems or forgetfulness) — is critically important to the long-term success of the transplant. 

We also know that patient and caregiver psychiatric history and current symptoms of anxiety, depression, trauma, and/or other mental health concerns are important to treat and monitor to support long-term physical health and mental health post-transplant, as mental health concerns can impact overall ability to care for a transplant. Adolescent and caregiver substance use similarly can impact the ability to care for a transplant, so identifying alternative coping strategies is helpful. Family environment is important to support supervision of medical care, cohesive family relationships and support, and positive communication about treatment concerns. There are additional financial, logistical, and psychosocial support aspects, including financial and health insurance resources and support from extended family and friends. 

Finally, the relationship between the child/family and the medical team is a long-term relationship, and thus we hope to foster a trusting, collaborative, and positive relationship. Overall, we prioritize comprehensive, whole-person care through these domains in order to optimize outcomes post-transplant, including the long-term success of the transplant, mental health, and quality of life. By partnering with our multidisciplinary colleagues across the transplant teams, psychologists can provide assessments and interventions for the behavioral and emotional aspects of illness and transplant to set children and families up for success. We support patient and family overall well-being during the most acute and challenging times of the illness and during the recovery and long-term chronic illness care, with a goal of helping children thrive in all aspects of their lives post-transplant, including academics, social life, family, physical health, and mental health. We love seeing children enjoying school, peer relationships, hobbies and activities, and just being able to be kids after transplant. It is truly an honor to support families through the most difficult times and see children thriving and enjoying their lives after transplant!

What are the key factors that determine a child’s eligibility for a transplant, and how do transplant teams prioritize pediatric patients on waiting lists?

Several key factors determine a child’s eligibility for pediatric organ transplantation. The severity of the child’s medical condition, particularly in cases of severe organ failure or life-threatening issues, is a primary consideration. Age, size, and underlying diagnoses, like congenital defects or hereditary conditions, also play a role. Immunological compatibility, including tissue typing and blood type, is essential to prevent rejection. Organ allocation policies must prioritize pediatric patients as a vulnerable population, with geographic considerations expanding the donor pool. 

What recent advancements in pediatric transplant surgery or post-operative care have improved outcomes for children, and what promising innovations are on the horizon? 

At our annual Transplant Families conference, we focus on innovations in pediatric transplant care. We often feature our learning network partners, who are comprised of transplant clinicians and who determine best practices across nationwide networks to improve outcomes in smaller populations. Recent advancements in pediatric transplant surgery and post-operative care include the use of smaller, portable Ventricular Assist Devices (VADs) for children with heart failure. ACTION Learning Network, for instance, reduced the stroke rate in VAD patients from 50% to 10% by sharing best practices. There’s progress in reducing the need for lifelong immunosuppressive drugs. Innovations like split liver procedures have also expanded organ availability and improved outcomes thanks to the learning network Starzl Network for Excellence and SPLIT. Looking ahead, tissue engineering and regenerative medicine offer promising potential for further enhancing transplant success and quality of life for young patients.

Pediatric transplant patients and their families face significant emotional and psychological challenges. What strategies or support systems are most effective in helping children and their families navigate the transplant journey? 

Navigating the transplant journey is overwhelming for pediatric patients and their families, as they face medical procedures, hospital culture, insurance, and mounting bills, all while juggling a broken family and dying child. A dedicated support system is crucial for both survival and healing. Psychosocial support, such as peer groups, helps families connect with others who have shared similar experiences. Inpatient, child life specialists, play therapists, and transplant psychologists help children manage anxiety and understand medical procedures. Social workers assist with accessing scarce resources. We must do a better job of prioritizing outpatient counseling which can help families in coping with anxiety, depression, and emotional challenges.

How can we increase organ donation rates, particularly for pediatric patients, and what role do education and advocacy play in raising awareness about the need for pediatric organ donors?

Many people don’t realize that children need organs from donors of similar age or size, which limits their options. Advocacy efforts, including personal stories from transplant recipients and donor families, can inspire action and drive legislative reforms. By building a culture of awareness, we can increase donor registrations, keep children a priority, and save more lives.

Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the long-term medication regimen for pediatric patients, and what are the key challenges in ensuring adherence, especially as children grow into adolescence? 

Transplant teams follow procedures to help teens take ownership of their medical care. Adherence is difficult as adolescents seek independence and face lifestyle adjustments like restrictions, checkups, and social stigma. Transition programs teach self-management skills and medication literacy, while technology like medication reminders via apps or pill-tracking devices can support consistency. Frequent reminders from family also help, as memory issues are common. Ultimately, having teens and young adults own their own experiences is key to adherence, which encompasses not just taking medication but also putting in the work to maintain this medically complex lifestyle. 

What are some of the key factors that influence the long-term success of pediatric transplants, and how do transplant teams ensure the best possible quality of life for children as they grow and develop post-transplant? 

The long-term success of pediatric transplants relies on medical management, treatment adherence, psychological support, and attention to these children’s growth. Transplant teams must prioritize quality of life by helping children return to normal activities, like school, sports, academic progress, and social interactions. Preparing for the transition to adult care ensures continuity. By offering holistic and consistent multidisciplinary care, teams help children thrive and achieve the best possible quality of life post-transplant. The goal is to achieve the best outcomes. We see that is possible with many pediatric recipients living more than 30 years with their original organ.

What are the key factors that determine a child’s eligibility for a transplant, and how do transplant teams prioritize pediatric patients on waiting lists?

Evidence of liver disease not amenable to medical therapy or not responsive to medical therapy is the key factor. There are also diseases where the transplanted liver provides sufficient enzymes that protect against metabolic crises. A series of objective criteria are put into a formula that spits out a score called the PELD score. The PELD score is thought to predict the likelihood of death without transplant in 3 months. We also can write an appeal to the national review board requesting extra points based on the severity of a child’s clinical status.

What recent advancements in pediatric transplant surgery or post-operative care have improved outcomes for children, and what promising innovations are on the horizon? 

I think the judicious use of fluids, which enables shorter inpatient stays following transplantation. I am personally excited about normothermic machine perfusion of less-than-perfect liver organs and would like to see the use of these grafts studied in children.

Pediatric transplant patients and their families face significant emotional and psychological challenges. What strategies or support systems are most effective in helping children and their families navigate the transplant journey? 

Most pediatric transplant programs have a child life program with child life specialists who work with the kids and their caregivers through procedures, tests, and treatments.

How can we increase organ donation rates, particularly for pediatric patients, and what role do education and advocacy play in raising awareness about the need for pediatric organ donors?

The pediatric liver transplant community continues to advocate for splitting livers. When an adult is primary for a liver offer, the liver is split, with a smaller portion going to the baby and the remaining to the adult. Another strategy that increases organs for children is domino liver transplantation. Here, a child with a metabolic disease that does not affect the liver gets an organ offer, and the liver of the child with the metabolic disease is removed and given to another child with a primary liver disease. The metabolic disease commonly involved in domino liver transplantation is maple syrup urine disease.

Immunosuppressive medications are crucial for preventing organ rejection. How do you manage the long-term medication regimen for pediatric patients, and what are the key challenges in ensuring adherence, especially as children grow into adolescence? 

As teens get older, caregivers start giving their teens some independence. However, if they fail to maintain oversight, poor medication adherence often results. Pediatric transplant programs have begun to recognize the importance of formal transition programs. These programs tend to start at age 12 and involve educating teens about their disease, their medications, ordering medication refills, and making their clinic appointments. Importantly, transition programs are not one-size-fits-all. Moreover, the timing of the initiation of transition varies for different kids.

What are some of the key factors that influence the long-term success of pediatric transplants, and how do transplant teams ensure the best possible quality of life for children as they grow and develop post-transplant? 

Medication adherence is important, and sub-clinical immune injury is something we are trying to understand.