EXPERIMENTAL AND CLINICAL TRANSPLANTATION

Objectives: Despite increased rates of survival, pediatric organ transplant is characterized by clinical complexities and psychosocial challenges. Understanding and addressing the psychosocial issues inherent in this population are crucial for optimizing their overall well-being and transplant outcomes. In this systematic review, we thus aimed to provide a comprehensive analysis of the psychosocial issues encountered by pediatric patients undergoing or awaiting organ transplant.
Materials and Methods: This systematic review was conducted by retrospectively searching PubMed, Scopus, ScienceDirect, and Cochrane electronic databases using the keywords “pediatric kidney transplantation” or “pediatric liver transplantation” or “pediatric heart transplantation” and “psychosocial problems” or “psychosocial issues” or “psychosocial outcomes” or “psychosocial needs.” The literature review resulted in 3746 initial studies, with 6 studies included in this systematic review.
Results: Examination of psychosocial problems experienced by pediatric organ transplant recipients in included studies showed factors such as depression, anxiety, quality of life, medication adherence, psychological distress, children’s psychosocial characteristics, healthy behaviors, mental and somatic well-being, fear of rejection, fear of recurrence, fear of secondary diseases, sleep problems, sadness, and exhaustion.
Conclusions: Pediatric organ transplant intertwines complex medical procedures with intricate psychosocial dynamics, placing nurses at the forefront of care delivery for pediatric transplant recipients and their families. In embracing a holistic approach to care, nurses advocate for the integration of psychosocial support into standard practice protocols, recognizing that optimal health outcomes extend beyond physiological parameters.

Key words : Pediatric heart transplantation, Pediatric kidney transplantation, Pediatric liver transplantation, Psychosocial needs, Psychosocial outcomes, Psychosocial problems

The number of organ transplants has exponentially grown worldwide in recent decades, surpassing 150 000 reported procedures in 2019.1 In the United States, 870 000 organ transplants were performed between January 1988 and October 2021, with 63 500 (7.3%) of these procedures conducted in pediatric patients aged 17 years or younger.² Medical and surgical advancements have played pivotal roles in enhancing the survival outcomes of pediatric organ transplant recipients, as evidenced by 5-year survival rates ranging from 70% for lung transplant recipients, between 75% and 90% for heart and liver transplant recipients, and exceeding 95% for kidney transplant recipients.^2,3

Despite the elevated rates of survival, pediatric organ transplant is also characterized by clinical complexities, encompassing the chronic administration of immunosuppressive agents, recurrent hospitalizations, the necessity for multiple surgical interventions, and challenges pertaining to nutrition and growth. In addition, this medical marvel presents a myriad of psychosocial challenges, particularly for pediatric patients.^4,5 Psychosocial variables, including psychiatric comorbidities, anxiety, inadequate social support, substance abuse history, and absence of a supportive partnership, are purportedly predictive factors associated with suboptimal posttransplant adherence to treatment.^6,7 Understanding and addressing the psychosocial issues inherent in this population are crucial for optimizing their overall well-being and transplant outcomes.⁸

The pediatric population undergoing or awaiting organ transplant represents a uniquely vulnerable group. Unlike their adult counterparts, pediatric patients are confronted with the dual burden of managing chronic illness and navigating the developmental milestones of childhood and adolescence.⁹ Consequently, pediatric patients may experience heightened levels of distress, anxiety, and uncertainty regarding their health and future prospects.¹⁰ Furthermore, the effects of organ failure and transplant extend beyond the individual child, affecting family dynamics, peer relationships, and academic pursuits.⁷

In addition to the immediate medical concerns, pediatric patients and their families must grapple with the emotional toll of living with a chronic illness and the prospect of undergoing a major surgical procedure.^11,12 The uncertainty surrounding the transplant process, including wait times, potential complications, and the possibility of rejection, can exacerbate feelings of fear and apprehension.¹³ Moreover, the disruption to normal routines, such as school attendance and extracurricular activities, can lead to feelings of isolation and disconnection from peers, further compounding the psychosocial challenges faced by pediatric transplant recipients.⁶

Despite the recognition of these psychosocial complexities, a comprehensive understanding of the specific issues faced by pediatric transplant recipients remains elusive. Although previous individual studies have explored various facets of this multifaceted phenomenon, a need exists for synthesis and consolidation of existing knowledge. A systematic review offers a rigorous methodology for examining the extant literature, identifying common themes, and elucidating areas warranting further investigation. Therefore, we performed a systematic review aimed at comprehensively analyzing psychosocial issues encountered by pediatric patients undergoing or awaiting organ transplant.

Materials and Methods

This study adhered to the PRISMA-P guideline, a framework utilized to assist authors in enhancing the quality of systematic review submissions.¹⁴ We analyzed studies that investigated the effects of psychosocial issues on pediatric patients undergoing or waiting for organ transplant and were published from 2014 through 2024. We conducted our analysis between December 1, 2023, and January 1, 2024.

The inclusion criteria for this systematic review were as follows: (1) cohort, descriptive, cross-sectional, case-control, case reports studies; (2) studies published between 2013 and 2023; (3) studies published in English; and (4) studies that examined a psychosocial outcome. The exclusion criteria were as follows: (1) randomized control trials, expert opinions, qualitative studies, unpublished theses, summary studies, and systematic reviews; (2) studies published before 2013; and (3) studies published in languages other than English.

We searched 4 databases (PubMed, ScienceDirect, Scopus, and Cochrane Library). Medical subject headings were used for English key words. Accordingly, the following search terms were used: “psychosocial issues” OR “psychosocial problems” OR “psychosocial outcomes” OR “psychosocial needs AND “pediatric heart transplantation” OR “pediatric liver transplantation” OR “pediatric kidney transplantation.” We selected studies according to Population, Intervention, Comparison, Outcomes, and Study design criteria.¹⁵

The selection process consisted of 3 steps. These steps encompassed database searches and subsequent evaluation of study titles, abstracts, and full texts. Initially, 2 independent authors conducted searches across databases, followed by the evaluation of study titles and abstracts to ascertain their relevance. Disagreements on the evaluation of the studies were resolved by the involvement of a third researcher. After evaluation, the researchers achieved consensus on the selected studies. For studies that met the inclusion criteria according to their abstracts, we collected full texts. The selection of the included studies is detailed in the PRISMA flow diagram (Figure 1).

In the initial search, we identified 3746 potential articles. After duplicates were removed, we screened the remaining 3296 articles by titles and abstracts for relevance. After 3191 articles that were irrelevant to the topic of study were excluded, we assessed the full text of 55 articles for eligibility. Forty articles were excluded based on the inclusion and exclusion criteria, and 15 articles were identified and appraised. After we examined the 15 articles, we again excluded those not directly relevant to the subject. Six articles were ultimately included in the systematic review (Table 1).

Data extraction and analyses

We used the data coding form to collect essential statistical data and study characteristics, including publication year, country of origin, methodology, sample size, measurement instruments, and publication type, among others. We ensured data reliability by comparing the coding of the first and the second researchers. Any discrepancies in coding were resolved through discussion involving both researchers. An additional researcher conducted an independent review of the extracted data to ensure accuracy and completeness. The included studies were summarized using a descriptive approach.

The literature review resulted in 3746 articles reached based on keywords. Of the 3746 articles, 500 were duplicates. The authors evaluated the titles and abstracts of the remaining 3246 articles and 3191 were excluded because they did not meet the inclusion criteria. After full-text review of the remaining 15 studies, 3 were excluded because of limitations to reach full details of the research, and 6 were excluded since because they were not directly relevant. Finally, 6 studies were included in the current systematic reviews. Figure 1 shows the PRISMA-P flowchart.

Studies that examined psychosocial problems experienced after or before pediatric organ transplant were conducted in Germany (n = 3), the United States (n = 2), and the United Kingdom (n = 1). Sample sizes of the included studies ranged from 5416 to 228.17 Sample groups consisted of pediatric patients with kidney (n = 2 studies) or liver (n = 4 studies) organ transplant.^7,16-20 All studies included in this systematic review were descriptive, and 3 of the studies^7,18,20 were follow-up studies. In 3 of the included studies, data were collected from young adults who received organ transplants as children.^7,18,20 Length of posttransplant follow-up ranged from 1 to 32 years.

Examination of psychosocial problems experienced by pediatric organ transplant recipients showed factors such as depression, anxiety, quality of life, medication adherence, psychological distress, children’s psychosocial characteristics, healthy behaviors, mental and somatic well-being, fear of rejection, fear of recurrence, fear of secondary diseases, sleep problems, sadness, and exhaustion.^7,16-20 Table 1 lists the results and summary characteristics of the studies included in this systematic review.

Our systematic review focused primarily on children’s experiences of psychosocial problems after or before organ transplant. Examined studies showed that psychosocial problems were prevalent among pediatric organ transplant recipients. Pediatric organ transplant recipients are more susceptible to psychosocial problems such as depression, anxiety, distress to fatigue, sleep difficulties, problems at work/school, worry, and low self-esteem, as well as developmental and neurocognitive delays, compared with healthy peers. The psychosocial problems after pediatric organ transplant can exert a negative effect on quality of life and medication adherence. Therefore, pediatric organ transplant requires significant attention to psychosocial factors for successful clinical outcomes.

The research underscores the significance of assessing children and their families for psychosocial issues both before and after transplant.^7,16 In 2022, Sakhuja and colleagues⁷ identified several psychosocial characteristics among children and their families that could contribute to suboptimal medication adherence and negative clinical outcomes during the posttransplant period. These factors included parental age and parental education level at assessment, type of insurance, household income, and most importantly being older than 12 years. Another study¹⁶ revealed that pretransplant assessment of psychosocial issues correlated with shorter hospitalization durations, lowered acute rejection risks, and improved medication adherence. The study also revealed that children identified as at risk during psychosocial evaluation exhibited reduced levels of family support, innate personality factors, and susceptibility to medication nonadherence. Specifically, children with a high risk of psychopathology and inadequate family support were found to have a heightened likelihood of nonadherence to medication regimens. Moreover, those who missed posttransplant appointments and exhibited nonadherence were similarly identified as at-risk based on psychosocial evaluation.

Anxiety is one of the common mental health problems in pediatric organ transplant recipients.^17,19 Kröncke and colleagues,¹⁹ in their study conducted during the COVID-19 pandemic, found that transplant patients experienced heightened levels of anxiety, with 10.7% of recipients exhibiting severe symptoms. This increase in anxiety can be attributed to the heightened vulnerability of transplant patients compared with the general population, leading to concerns about experiencing more severe symptoms if infected. According to a study conducted with children who underwent liver transplant,¹⁷ 14.5% of the children had symptoms of anxiety after transplant, and 5.4% had severe anxiety symptoms. In addition, the study found that being female and older age were associated with severe anxiety.

Depression is another of the common mental health problems in pediatric organ transplant recipients.^17,19 Kroncke and colleagues,¹⁹ in a study conducted during the COVID-19 pandemic, found that transplant patients experienced depression symptoms, with 8.9% of recipients exhibiting severe symptoms. In a study from 2016 by Hames and colleagues¹⁷ involving children who underwent liver transplant, 9.7% exhibited symptoms of depression, whereas 2.2% reported experiencing suicidal thoughts. The same study concluded that there was no significant relationship between sex and age concerning depressive symptoms and suicidal thoughts. Nevertheless, it has been found that, as the severity of depression symptoms increases, there is a corresponding increase in anxiety severity, increase perceptions of illness, decrease in perceived personal control, increase in perceived illness identity, and heightened anxiety and emotional responses.¹⁷

In a study that investigated the long-term outcomes of children who underwent liver transplant, researchers evaluated the quality of life of adults who had received organ transplants during childhood.¹⁸ In this study, quality of life along with physical and mental health components were evaluated. The study showed that physical health assessments were similar to the normal population, but there were deteriorations in mental health assessments compared with the normal population. In addition, a small number of participants experienced psychological distress, with transplanted adults having a lower quality of life than the normal population.¹⁸

A subset of pediatric organ transplant recipients may experience fear of rejection, fear of recurrence, fear of secondary diseases, sleep disturbances, feelings of sadness, fatigue, and psychological distress.^17,20 Young people who reported psychological difficulties were categorized into 3 groups: physical complaints, practical stress factors, and psychological stressors. Psychological stressors encompassed anxiety (30.2%) and low self-esteem (27.5%). Among physical factors, fatigue and sleep problems were prevalent, with one-third of the participants experiencing these. Sleep issues are known to decrease quality of life. In addition, 30.8% of participants encountered practical stresses, including financial worries, whereas 29.1% faced challenges related to school/work (27% among liver transplant recipients) and relationship difficulties.¹⁷ In a study from 2019, Mayer and colleagues²⁰ discovered that participants experienced fear of rejection, fear of recurrence, and fear of secondary diseases, albeit at low rates. The investigators reported that the proportion of participants experiencing sleep problems, exhaustion, and sadness was higher and similar to the literature.

The realm of pediatric organ transplant intertwines complex medical procedures with intricate psychosocial dynamics, placing nurses at the forefront of care delivery for young transplant recipients and their families. Through a comprehensive examination of the literature, we found a diverse array of psychosocial challenges encountered by pediatric transplant patients, spanning from anxiety and fear to depression and psychological distress.

As pivotal members of health care teams, nurses play a vital role in addressing these psychosocial concerns. Beyond the administration of medical treatments, nurses serve as empathetic listeners, advocates, and educators, providing holistic care that extends beyond the confines of physical health. By fostering therapeutic relationships with patients and families, nurses can create a supportive environment conducive to open communication and emotional expression, thereby mitigating the psychological burden associated with organ transplantation.

Furthermore, nurses are instrumental in implementing evidence-based interventions aimed at enhancing the psychosocial well-being of pediatric transplant recipients. From facilitating coping mechanisms to coordinating interdisciplinary support services, nurses leverage their expertise to tailor interventions that address the unique needs of each patient and family. Through continuous assessment, monitoring, and intervention, nurses can empower pediatric transplant recipients to navigate the challenges of transplantation while fostering resilience and promoting overall well-being.

In embracing a holistic approach to care, nurses advocate for the integration of psychosocial support into standard practice protocols, recognizing that optimal health outcomes extend beyond physiological parameters. By prioritizing the psychosocial dimensions of pediatric organ transplant, nurses contribute to the cultivation of a healing environment that honors the inherent dignity and resilience of every pediatric transplant recipient and their family.

Volume: 22 Issue: 10 October 2024 - Supplement - 5

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