Additional Considerations in Transition of Care

Executive functioning

Executive functioning (EF) is a multi-construct component that includes various domains that subserve cognitive regulation (e.g., attention, working memory, divided/ switching attention, planning, organization, flexibility, sustaining attention), and emotional and behavioral regulation (e.g., modulate emotional responses, inhibit responses, monitor behavior, and adapt to feedback). Adequate EF abilities are necessary to complete complex, goal-oriented, and higher order reasoning tasks. These skills develop over the course of childhood and early adulthood, and are subserved by the prefrontal cortex, with full neurological maturation anticipated in the mid 20’s.  EF is central to everyday life, allowing individuals to plan, focus their attention, and switch between different tasks. These abilities play a key role in allowing individuals to maintain effective levels of independent functioning, and better EF has been associated with improved quality of life in older age ¹. Research suggests that EF skills can be impacted in SOT² which could place this population at risk for challenges medical outcomes, academic ability, and daily living skills, particularly in regard to self-management.

References

1. Ferguson HJ, Brunsdon VE, Bradford EF. The developmental trajectories of executive function from adolescence to old age. Sci Rep 11, 1382 (2021). 

2. Cushman GK, Stolz MG, Blount RL, Reed B. Executive functioning in pediatric solid organ transplant recipients: A meta-analytic review. Transplantation. 2020;104(2):357-366. 

Special needs:  Intellectual disabilities and mental health concerns

Children with intellectual disabilities account for an estimated 7 to 9% of pediatric heart, liver, and kidney transplants.¹  Research demonstrates that rates of anxiety, depression, adjustment disorder, and PTSD may be higher among pediatric transplant patients, with 14 to 50% of patients experiencing a mental health disorder ^2-5. Since mental health and intellectual and developmental disabilities (IDD) impact adherence and transplant care, there are important considerations for transition programs to meet the needs of these patients and to carefully consider the optimal timing of transition. For instance, patients with IDD may require increased caregiver support for significant IDD, whereas patients with mild IDD may require less intensive support, although more support than their typically developing peers. Patients with significant IDD may benefit from additional discussions to support transition. For example, pediatric teams should also discuss how caregivers will support patients at transfer by attending appointments with them at the adult center or giving MyChart proxy access. Patients with milder IDD may need additional time to support their preparation for transition. Overall, pediatric teams may expect that patients with IDD will require more support and may transition at a later point than typically developing peers. 

Similarly, patients with mental health concerns have unique needs in relation to timing of transition. Patients who have significant recent or present mental health concerns and/or crises may require additional support and time before transfer. Timing should be carefully considered in the context of these concerns to prevent further stress and exacerbation of mental health concerns. Patients with recent suicidality or significant mental health crises may require stabilization and engagement in behavioral health treatment prior to transition, as transition may be an additional stressor. Patients with mental health concerns also may be overwhelmed by the transition process and benefit from treatment to address their mental health to prevent being lost to follow-up in the adult system. 

References

1. Wightman et al., 2021: https://doi.org/10.1016/j.jpeds.2021.03.056
2. Duken et al, 2024: https://doi.org/10.1016/j.pedn.2023.12.033
3. Penner et al., 2023:  DOI: 10.1111/petr.14151
4. Diaz et al., 2020: https://doi.org/10.1016/j.jpeds.2019.10.022

5. Quinlan et al., 2020: https://doi.org/10.1111/petr.13847

    

Transition in the setting of nonadherence  

Adherence to transplant care is the foundation for successful transition and should be assessed and encouraged throughout the transplant process, starting as early as the evaluation for transplant.  The transplant recipient has a care routine with daily meds, routine lab tests, clinic appointments, and related tests and procedures.  Additionally, they may be hospitalized frequently.  Many have difficulties with adherence early on after transplant, while others initially do well but then have problems during adolescence related to the specific developmental tasks and challenges of that period.  Sometimes there are socioeconomic issues or clinical evidence of PTSD, and addressing these issues may help improve adherence. It is well known that better outcomes after transition are noted in those with good adherence. Nonadherence is a herald for morbidity and mortality in transplantation, particularly during the vulnerable period when care is transferred to the adult setting.

• It is important to take the time to assess adherence. While direct questioning can be done, objective measures like the standard deviation of tacrolimus trough levels (MLVI) are important in assessing adherence.
• Assessments by a psychologist, social worker, pharmacist, and/or APP, may help identify risk factors that could benefit from targeted intervention.
• Education during each clinic visit to reinforce the importance of adherence and the consequence of nonadherence is essential.      This includes short-term risks of rejection and increased immunosuppression with associated comorbidities and long- term risks of graft loss and patient death.
• Instituting a program of more frequent monitoring when tacrolimus levels are erratic or after an episode of rejection may support return of normal graft function. Stable levels which reflect adherence should be acknowledged and congratulated. Youth should be encouraged to monitor their levels through the transplant center portal.
• Ensuring good adherence requires teamwork from the multidisciplinary transplant team, the teen, parents/caregiver, and the primary care provider.
• Transfer should be planned when graft function is stable for at least a few months and new-onset comorbidities have been addressed.  The young adult should also have sufficient self-management skills to the best of their ability and demonstrate a good understanding of their chronic condition and medical care.
• The adult transplant team should be informed of the YA’s ability to be adherent.  Patients with a history of nonadherence should be monitored closely for any lapses in self-care as they engage in the adult care setting so that their transplant health is maintained.

The effect of psychological health and long-standing medical trauma for the YA transplant recipient 

Traumatic stress results from traumatic events which are defined as a frightening, dangerous, or violent event that pose a threat to a child’s life of bodily integrity. For many patients living with solid organ transplantation (SOT), medical trauma in response to a single or multiple medical events may occur after a serious illness, medical procedure, or an invasive or frightening treatment experience.¹

One of the major health policy and research goals established in 2018 by the National Heart, Lung, Blood Institute is to accurately identify neurodevelopmental and psychological outcomes in children with congenital heart disease to improve patient and family outcomes through targeted interventions.²  For children who have undergone SOT, psychological support is essential as their sense of security, identity, and bodily integrity is affected. Post-traumatic stress disorder and anxiety in pre- and post-transplant recipients has been investigated.³ 

Standardized screening tools should be utilized in this population with the goal of developing guidelines and recommendations for mental health and psychosocial care for youth who are SOT recipients. Future investigation is needed to shift towards improving methods, measurement, and analyses of outcomes to provide early identification of significant issues, prevention, and intervention².Resilience following medical trauma may be enhanced through evidenced-based interventions as well as formalized programs in healthcare transition⁴.

The National Child Traumatic Stress Network is part of the Children’s Health Act to raise the standard of care and increase access to services of children and families who have experienced traumatic events.  The NCTSN works through local and state partnerships to integrate trauma-informed services into all child-serving systems. The website contains comprehensive content on traumatic stress including trauma screening, assessment and treatment; trauma-informed care, and resources.

References 

Amatya K, Monnin K, Steinberg C et al.  Psychological functioning and psychosocial issues in pediatric kidney transplant recipients. Pediatr Transplant. 2021 Feb;25(1):e13842. doi: 10.1111/petr.13842. 

National Child Traumatic Stress Network:  www.nctsn.org

Rossi A, De Ranieri C, Tabarini P et al. The department of psychology within a pediatric cardiac transplant unit. Transplant Proc. 2011 May;43(4):1164-7. doi: 10.1016/j.transproceed.2011.01.119. 

Sanz JH, Anixt J, Bear L et al. Characterisation of neurodevelopmental and psychological outcomes in CHD: a research agenda and recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiol Young. 2021 Jun;31(6):876-887. doi: 10.1017/S1047951121002146.