Emotional and psychological well-being is an important part of long-term transplant health and outcomes. Many pediatric recipients experience neurodevelopmental, emotional, or behavioral challenges that pose risk to adherence, quality of life, and graft outcomes. This section outlines age-specific considerations, common stressors, and the importance of support systems, coping strategies, and open communication during the transition process. It also provides practical guidance for providers to recognize mental health needs and access appropriate resources.
Psychosocial Challenges in Pediatric Transplantation
Transplantation is characterized as a life-saving treatment for end-stage organ disease to restore physical function and improve quality of life (QOL). Criteria for determining success after transplant have predominantly focused on objective clinical measures such as survival, organ rejection, and improvement in medical status. However, these objective measures do not capture the profound psychosocial stressors that pediatric transplant patients may experience before, during, and after transplantation. Assessing the psychosocial dimensions of transplantation is important as there are challenges and opportunities for growth.
As a response to the challenges associated with transplantation, pediatric transplant recipients may also experience positive transformative growth following their transplant, aligning with literature on post-traumatic growth. While post-traumatic growth theory is widely cited to conceptualize how individuals can experience positive growth following adverse or potentially traumatic events, its application in relation to the field of transplantation has been sparse. In the context of existing findings, transplantation can be conceptualized as a potential catalyst for positive growth and personal change.
Discussion Points for Providers and AYA
These discussion points and questions may help patients identify their supports, the signs for when they need supports, and ways to access support, especially in the context of mental health concerns.
Recommendations for Pediatric and Adult Transition Teams:
- Providers and/or the appropriate team members (psychology, psychiatry, social work) should assess safety and suicidality if there are concerns or red flags such as significant symptoms of depression or anxiety or impairment in their daily life.
- If providers cannot assess safety and SI and do not have access to psychosocial team members who can assess SI, they should ensure that patients have an evaluation through staff at a hospital emergency department or crisis center.
- 988 Lifeline Get Help - 988 Lifeline is a free on-line or phone service that provides 24-hour access to discuss safety and mental health concerns with staff through confidential conversations and judgment-free care. AYAs at risk should be aware of this resource and store the number in their phone.
- If providers cannot assess safety and SI and do not have access to psychosocial team members who can assess SI, they should ensure that patients have an evaluation through staff at a hospital emergency department or crisis center.
Understanding Your Patient’s Outcomes: The Value of Patient-Reported Outcome Measures
The understanding that psychosocial factors can shape transplant outcomes provides an impetus to measure the social and psychological dimensions of QOL among pediatric transplant patients. Patient-reported outcome measures (PROMs) are standardized instruments used to collect subjective data on patients’ self-reported QOL, health, and/or functional status associated with their health care or treatment. PROMs can help identify concerns regarding functional and emotional status, help health care providers detect under-recognized problems, such as depression and anxiety, and solicit support from multidisciplinary team members. Possible PROMs to consider implementing in clinical practice that capture the multidimensional nature of children’s QOL following a transplant, as well as psychological functioning include the, the Generalized Anxiety Disorder Scale-7 (GAD-7), and the
- PedsQL TM (Pediatric Quality of Life Inventory TM)
- Generalized Anxiety Disorder 7 Item Scale (GAD-7) - Psychology Tools
- Form: Patient Health Questionnaire-9 (PHQ-9)
In pediatric clinical settings, the implementation of PROMs has gained increasing importance as health services prioritize patient-centered care practices. In turn, PROMs hold the potential to improve the quality and safety of health care by placing the patients at the center of decision-making. The ways in which PROMs can measure psychological and social dimensions of health and wellbeing alongside traditional physiological indices of health status can foster a holistic and multidimensional perspective on QOL. This multidimensional perspective attends to the complex, evolving and multifaceted nature of children’s lives and QOL following a transplant.
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