Can you talk about some of the psychological and emotional hurdles that these kids face prior to needing a transplant?
It's pretty incredible what these kids and families have to go through.
The transitions from adolescence to the teenage years and into young adulthood are times of such change and developmental tasks, such as identity formation,” she said. “It's also a time where following the strict medical care plan for transplant patients can be a huge challenge. For example, teens want to associate more with their peers, want to have more autonomy, take on tasks themselves, blend in with their peers and not be different.
There’s also such a range of acute and chronic illnesses in transplant. Additionally, waiting for an organ can be its own unique challenge as well. We are supporting them through that waiting period as well as during the actual transplant surgery admission where there are many feelings of anxiety, fear, excitement. Coping with being in the hospital, with upcoming surgery, the acute illness piece – it’s a lot of complex feelings for patients that young to reckon with.
Scale and stories
Christofferson points out that there were 1,794 pediatric solid organ transplants – specifically heart, liver and kidney, nationally in 2025 for newborns up to age 18. Most were kidney transplants (759), followed by liver (574) and then heart (461). However, she said the statistics aren't the scale we should focus on fully.
“The statistics can often hide the individual toll and the individual story of each of those children and their families,” Christofferson said.
What does integrated pediatric transplant psychology look like in practice?
As psychologists on the team, we are providers who are there to support those behavioral and emotional needs – the overall psychological well-being of patients and their families. We do assessment and treatment across heart, liver and kidney transplant patients during their inpatient hospitalizations, procedure visits and outpatient multidisciplinary medical clinic visits.
All hands, team-based approach
We have a preventative care model where we see patients and families on a set schedule, especially in the first three years post-transplant when the patient is most vulnerable to rejection episodes. It's a very intensive medical treatment phase. Following that, we stay with the patients as they adjust to their new life.
All multidisciplinary providers on the team consider that whole child, whole family care. We also partner with additional psychosocial providers, such as:
- Social workers
- Child life specialists
- Family health navigators
- Creative arts therapists
- Palliative care specialists
- Spiritual care providers.
We also support caregivers. We have caregiver support groups and additional patient and family educational sessions. It’s a really comprehensive psychosocial support team.
Interventions
Our interventions can focus on these health and behavior aspects since we're integrated into the medical care. Our psychological pretransplant evaluation includes assessment of the patient and family, looking at risk and resilience factors that might impact coping with the transplant. It has a focus on supporting patients to optimize their successful outcomes post-transplant across the physical and medical domains.
Some of these include:
- Coping with illness and transplant
- Adherence to medical regimens and treatment
- Anxiety, depression, and medical trauma
- Adjustment to illness
- Family coping and mental health.
Therapies
In terms of therapies and pediatric psychology interventions, we conduct health and behavior assessments and interventions, and we use a range of evidence-based treatment tools, such as cognitive behavioral therapy, acceptance and commitment therapy, mindfulness, a lot of adherence strategies and motivational interviewing, pain management, relaxation strategies.
There often are challenges that come up around the transplant itself, post-transplant complications, frequent doctor appointments or even hospitalizations.
What is the intake process like on the psychological front for pediatric patients? Are there factors that you're looking for for long-term success?
The medical advancements have come so far with transplant, which is amazing to improve outcomes. As that has advanced, we have been able to focus more on how psychological and quality of life factors may also be important in impacting long-term success for transplant.
Numerous psychological factors and psychosocial factors have been demonstrated to correlate with successful physical and psychological health post-transplant, including:
- Knowledge of the illness and transplant understanding by the patient and family
- Patient and caregiver previous psychiatric history and current symptoms – anxiety, depression, trauma, other mental health concerns that could be exacerbated by the stress of going through transplant
- Substance use for the patient if they're teens or young adults and caregivers
- Family environment, including family relationships, communication, financial, logistical, psychosocial supports
- Fostering a long-term, collaborative relationship between the family and medical team
It’s a very comprehensive approach to support both the medical and psychosocial aspects both before and post-transplant. We want these kids to thrive in their academic, social and family lives and go back to thriving in those more typical tasks and flow of childhood.
Can you talk about the challenges of immunosuppressant therapy during childhood/teen years?
Taking immunosuppressants creates some challenges that are very different from a typical childhood. The schedule and adherence to them are rigid and strict to avoid potential rejection episodes of the organ. Unless the patient has a transplant community they are part of, most of their friends might not be going through this experience.
Combined with that, we know that the prefrontal cortex of the brain is not fully formed until around 25. Executive function skills that are so critical to manage a complex post-transplant medication and health regimen are not all online yet – that's a threat to adherence too. We have this complex interplay of teens striving for independence, but not quite being ready to manage their medications fully on their own. And so we're trying to help patients balance that autonomy with support from their caregivers and with adherence strategies.
There are other factors that impact adherence that we really think about so we can assess and intervene and set supports up on:
- Mental health, anxiety, and depression can really impact treatment adherence
- Substance use for teens and young adults
- The level of family and friend support that they have to supervise and be accountability partners
- And then of course systemic barriers: logistical, financial barriers, health disparities
How is the transition to adult care handled for pediatric transplant patients?
We start preparing patients for transition to adult care at age 12. But we also remain flexible and adjust for every patient. The transition to adult care typically is sometime around age 18, but it could be later into young adulthood. It depends on age of transplant, medical and developmental status, additional comorbidities, or additional subspecialty involvement at Children's. We conduct a psychosocial assessment battery in the year before transition to see if there are any areas that we need to focus on before patients transition.
It’s a big change because often these patients have been followed by our pediatric center for many years, sometimes their entire life. And they might have really long-standing relationships with the transplant team. We try to make it less scary by introducing them to the university transplant center across the street and provide strategies to support their independence in their healthcare to make that eventual handoff as seamless and comfortable as possible.
What has the response from children, families and support networks been like?
The normalization of mental health and mental health treatment in recent years has been very helpful overall. Because of that, there are patients and families who have worked with a psychologist or a therapist before, either within their medical care or within their community in therapy or in their school. Other patients have never met with psychologists or therapists before but are eager for that support.
There are sometimes patients and families who've never worked with a psychologist. They might be confused why psychology is a standard part of the multidisciplinary transplant team and part of the evaluation. It’s our job to explain our role, and help them understand that we're there to support their resilience and success in the context of such a stressful experience for the child and the family.
This is important because we know that transplant can exacerbate mental health concerns or bring new ones up. Proactive and preventative care is key to the approach. Just being familiar faces to the families can help them feel more comfortable talking with us if new concerns arise in the future.
What got you interested in this field?
Working closely with these amazing multidisciplinary transplant teams is really incredible. To not be working on your own, but to have team-based care, I love that part of our work.
Above it all, the resilience of these pediatric patients and their families is very inspiring. Supporting their health journey – mental and physical – from pre-transplant to thriving post-transplant is so rewarding.
Key points:
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Children’s Hospital Colorado offers integrated pediatric psychological care for transplant patients.
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The individualized approach helps patients aging from newborns to age 18 build critical resilience and mental health foundations for long-term health success following a transplant.