Key words : Mental health care, Psychiatric nurses, Stress disorders

Introduction

Solid-organ transplant (SOT) is one of the best-accepted treatments for people with end-stage organ failure.^1,2 According to data from March 2024, 2151 children and adolescents worldwide are waiting for organ transplant.³ Children and adolescents are frequently exposed to potentially traumatic events during the end-stage organ failure phase, such as invasive diagnostic tests, medical procedures, surgical interventions, life-threatening illnesses, and intensive care.^4,5 The survival rates of children and adolescents undergoing organ transplant have progressively improved as a result of advancements in surgical techniques and medications and advancements in infection control.^6,7 Organ transplant extends the lives of patients on the brink of organ failure, providing patients with a renewed lease on life and alleviating health issues associated with their conditions, thus enhancing their quality of life (QoL).⁶ During care of a child undergoing transplant, various steps must be taken, including decision-making, thorough evaluation of the child, donor selection, posttransplant intensive care, infection prevention, treatment, and ensuring healthy development.^8,9

The transplant process affects children and adolescents in many ways. Children who have undergone kidney and liver transplant have been reported to have lower levels of QoL; increased incidence of depression, attention deficit, and hyperactivity; and higher rates of educational and social problems compared with their healthy peers.⁶ In addition, social isolation and family interaction may be disrupted as a result of limited participation in normal childhood activities. In this context, it is expected that, despite the successful recovery of organ function, anxiety symptoms related to medical procedures, generalized anxiety, posttraumatic stress, and depression may occur. Moreover, with the potential acute threat to life and uncertainty regarding future health outcomes, organ transplant during childhood can be a traumatic event for children and adolescents.^2,10

During the rehabilitation process after SOT, children and adolescents undergo an adaptation phase that involves adjusting to the transition from hospital to home, resuming physical activities, reintegrating into school, accommodating new restrictions resulting from immune system suppression, and making adjustments in family dynamics to establish a “new normal.” Thus, QoL and general well-being are increasingly important outcome measures to consider after SOT.^1,11

Despite rapid improvements in outcomes of posttransplant organ function, pediatric SOT recipients often maintain consistently lower levels of QoL compared with the general pediatric population.¹² Although many children have higher QoL posttransplant versus pretransplant, their QoL levels often remain similar to those in other chronic disease groups, such as patients with rheumatoid arthritis or with cancer in remission.^13,14 Identification of risk factors for poor QoL in children and adolescent organ transplant recipients is important. Among the various factors associated with decreased QoL after SOT are advanced age at transplant; frequent outpatient visits, biopsies, blood draws, procedures, and tests; need for hospitalizations; lifelong medication therapy to maintain good organ function and patient survival; the development of a secondary chronic illness due to immunosuppression; and increased family conflicts.^1,15 However, further research is needed to fully characterize the medical and sociodemographic factors influencing QoL, to determine whether factors vary depending on the type of organ transplant received, and to identify other potentially important modifiable risk factors.

A better understanding of the mental health needs of pediatric transplant recipients is crucial for several reasons. Of note, mental health challenges are frequently endured silently, and symptoms only manifest when they escalate to the point of disability or crisis or when resources for timely mental health care are lacking.^2,16

Individuals who experience a traumatic event, such as receiving a diagnosis of a serious medical condition or undergoing a major medical procedure, may subsequently experience a variety of posttraumatic stress symptoms (PTSS), including increased arousal or reactivity, challenging cognitions or emotional symptoms, and avoidance behaviors.^17,18 Although most individuals who undergo a traumatic event do not meet the full diagnostic criteria for posttraumatic stress disorder (PTSD),¹⁹ which necessitates the presence of specified PTSS for more than 1 month, many individuals do experience PTSS. These are subclinical symptoms of PTSD that can affect daily functioning.¹⁷

Pediatric SOT recipients may be especially prone to PTSS compared with other pediatric populations because of their chronic risk of future life-threatening organ failure or rejection, experience of waiting for an indeterminate amount of time for an available organ while facing end-stage organ failure, undergoing major surgeries, awareness of possible medical complications, and subsequent need for lifelong adherence to potentially complex medical regimens.^20-22 Increased PTSS has been linked to both medical and psychosocial concerns among pediatric transplant recipients. High-level PTSS has been associated with medical complications17 and high-level medication nonadherence, which could lead to adverse health outcomes, such as graft loss, episodes of organ rejection, and even death.²² Similarly, high-level PTSS among pediatric transplant recipients is also associated with poorer psychosocial functioning, including increased anxiety and depression, and decreased QoL.^1,22,23

Studies examining PTSS have shown that pediatric transplant recipients experience more symptoms than the general population or even than patients with other chronic health conditions.^2,20 Given the research indicating elevated rates of PTSS and its associations with negative medical and psychosocial outcomes, further investigation into the risk factors related to poorer outcomes following transplant, such as PTSS, is warranted. This includes exploring some risk factors that may be present before transplant, which could inform early, targeted interventions or evaluations.²² Considering the cumulative nature of traumatic experiences, early PTSD screening and treatment strategies should not be overlooked as part of the posttransplant rehabilitation process.¹

Unresolved PTSD in children can lead to posttransplant medical nonadherence, possibly stemming from avoidance of traumatic reminders related to their illness or past medical procedures.²⁴ Although the interaction between PTSD and decreased QoL has been well-documented among adult SOT recipients, few studies have explored this link in children.²⁵ Established psychological therapies, such as cognitive-behavioral therapy, can be effective interventions for treatment of PTSD in children and adolescents.²⁶ Because PTSD is amenable to treatment, treatment represent an important modifiable risk factor to improve posttransplant outcomes.¹

This systematic review delves into the intricate relationship between pediatric organ transplant and PTSD, shedding light on the points crucial for addressing the psychosocial well-being of young recipients and their families. It also highlights the multifaceted nature of PTSD in the context of pediatric transplant, examining its effect on the mental health of recipients. In addition, this study aims to systematically analyze studies on PTSD in pediatric patients who have had or are waiting for organ transplant. Results gained may be a guide for psychosocial interventions in the care of pediatric individuals waiting for organ transplant.

Materials and Methods

Data sources

The Preferred Reporting Items for Systematic Reviews and Meta Analysis (PRISMA) Checklist²⁷ and Cochrane Guidelines²⁸ were taken into consideration during study preparation.

For this systematic review, studies in English published between January 2013 and December 2023 were examined retrospectively. We utilized the PubMed, Scopus, ScienceDirect, Web of Science, and Cochrane databases. We used the following key words: “pediatric kidney transplantation,” OR “pediatric liver transplantation,” OR “pediatric heart transplantation,” AND “posttraumatic stress disorders.” The time period for publication and any other such filters were applied during the search. This was a subject-specific search; we ultimately selected 8 published papers in our preliminary search.

Selection criteria

We applied filters based on study inclusion or exclusion criteria. We assessed all abstracts in terms of the following inclusion criteria. (1) Studies were conducted with individuals under 20 years of age who had received a transplant or were awaiting transplant; (2) studies were descriptive research with full text available online in English; and (3) studies were published in peer-reviewed journals from January 2013 through December 2023.

We excluded (1) studies that were not descriptive (such as thesis, dissertations, letters to the editor, committee reports, government reports, conference papers, and systematic reviews); (2) studies that were not directly relevant and repetitive studies; (3) studies whose full text was not available; and (4) studies conducted with individuals who were 18 years of age and older who had received a transplant or were awaiting transplant.

We used population, intervention, control, outcome, and study strategies for data search. Research questions were formed as sample group/population for population, intervention/intervention, comparison for control, result for outcome, and study design for study strategy. We analyzed sample characteristics and size of each study included in the review for population, the posttraumatic stress experienced by pediatric transplant recipients, and type of descriptive studies. Table 1 lists characteristics of the included studies.

Our study did not require ethics committee approval because the research articles included in the sample of this study were obtained from open-source electronic databases.

Statistical analyses

No statistical analysis was performed because the accepted articles did not meet the meta-analysis conditions.

Results

We obtained 267 studies based on key words. Of the first 267 articles, 164 were duplicates. We evaluated the titles and abstracts of the remaining 164 articles, and 150 were excluded because of nonconformity to the inclusion criteria. After the full-text review process of the remaining 14 studies, 6 were excluded because of limitations to reach full details of the research and 3 were excluded because they were not directly relevant. Finally, 5 studies were included in the current systematic reviews (Figure 1). We used the PRISMA flowchart to control the study.

Studies that examined incidence of PSTD after pediatric organ transplant were conducted in the USA (n = 3) and Canada (n = 2). Sample sizes of the included studies ranged from 51²¹ to 120.²⁹ The sample group of the studies consisted of pediatric patients with solid-organ (heart, liver, lung, kidney) transplant.^1,2,21,22,29 Analysis of included studies showed that age at transplant ranged from 1 to 19 years and the duration posttransplant ranged from 1 to 18 years. Examination of PTSD levels among patients showed that rate of low-level PTSD ranged from 9.2% to 85.2%^1,21,29 and rate of high-level PTSD ranged from 13.1% to 22.6%.^1,2,22

Studies included in this systematic review also examined other variables, including QoL,^1,29 medication adherence,²⁹ personality, functioning,²² and other psychosocial symptoms (such as depression, anxiety, and needle fear).² Table 1 lists the results and summary characteristics of the included studies.

Discussion

This systematic review focused on children’s experiences of PTSS after organ transplant. We found that children undergoing organ transplant frequently have at least 1 symptom of PTSD. The symptoms of PTSD following pediatric organ transplant commonly exert a negative effect on QoL and adherence to medication.

Research indicated that PTSD is prevalent among children undergoing organ transplant. Rate of low-level PTSD varied between 9.2% and 85.2%,^1,21,29 and rate of high-level PTSD varied between 13.1% and 22.6%.^1,2,22 Duncan-Park and colleagues²⁹ reported that 9.2% of children undergoing pediatric organ transplant had PTSD symptoms. The researchers categorized trauma experiences of children and found the most prevalent was exposure to illness/medical trauma (53.8%), followed by grief (46.2%), bullying (24.4%), and serious accidental injury (15.1%).²⁹

Hind and colleagues¹ reported that 85.2% of pediatric organ transplant recipients exhibited at least 1 symptom of PTSD. Their study identified that 13.1% of these patients were at significant risk of developing PTSD, with 1 heart transplant recipient, 5 kidney transplant recipients, and 2 liver transplant recipients falling into this category. The researchers also compared PTSD symptoms among transplant groups, revealing a higher risk among kidney transplant recipients than among liver transplant recipients (1.8-fold change). They also identified associations between an increase in trauma symptoms and such factors as the number of medications used by pediatric patients, the duration of hospitalization, and low hemoglobin levels.¹

In a study of children who received heart transplants for the first time and retransplant, 34% of the children had symptoms of PTSD. Although 55% of children undergoing heart transplant for a second time had PTSD during transplant evaluation and/or in the peritransplant period, PTSD was identified in 28% of children undergoing transplant for the first time.²¹ In a study that investigated mental health of children undergoing organ transplant, 22.6% had high levels of PTSD. The study also observed that girls had higher levels of trauma symptoms than boys. Notably, the study concluded that trauma symptoms were unrelated to factors such as the time elapsed since transplant, age at transplant, and the type of organ transplanted.² Another study reported that 15% of the adolescents who underwent organ transplant had clinical PTSD symptoms; no sociodemographic variables (eg, gender, age, race) or medical variables (eg, type of transplant, hospitalizations, time since transplant) were associated with PTSS level.²²

An important finding gleaned from the studies included in our systematic review is that PTSD adversely affects medication adherence.^1,29 Duncan-Park and colleagues²⁹ reported that 34.8% of children undergoing organ transplant met the criteria for medication nonadherence. Investigations based on the type of transplanted organ revealed that the level of PTSD continued to be a significant determinant for medication adherence in children who received liver transplants. Within the scope of the study, level of PTSD was reported as an influential determinant of high levels of medication nonadherence among children undergoing lung transplant. The study also noted that there was no relationship between children’s sociodemographic characteristics (such as type of transplant, type of trauma experienced, age at transplant, time elapsed since transplant, average steroid dosage used) and their medication adherence.²⁹ Another study reported that kidney transplant recipients exhibited more trauma symptoms.¹ It was thought that the complexity of the treatment process for kidney transplant recipients (such as use of a greater number of medications, longer hospital stays) could affect the patient’s ability to perform daily life activities and may create stress regarding medication adherence. Considering all these factors, kidney transplant recipients may face an increased risk of medication nonadherence.¹

Two studies included in our review examined PTSD and QoL variables.^1,29 The studies showed that QoL of adolescents was at a moderate level.^1,29 In the study from Hind and colleagues,¹ a strong correlation was shown between children’s trauma level and their QoL. Patients with lower QoL tended to be older at the time of transplant, had any disability, and had lower hemoglobin levels. In addition, although no relationship was shown between transplant types or sex (1.1-fold greater in males) and QoL, a relationship was shown with level of PTSD.1

Children undergoing or completing organ transplant not only experience PTSD but also other psychosocial problems. These psychosocial issues include depression, anxiety, fear of needles, personality changes, and changes in functionality.^2,22 In self-reported results to measure levels of depression in children, reported by children and by parents, parents reported higher levels of depressive symptoms compared with self-reported results from children. In addition, parent reports showed that 10% of children exhibited clinically significant depressive symptoms, whereas self-reports from children showed this rate to be 5%. Parent reports also showed that depressive symptoms were higher in girls than in boys.² In self-reported level of anxiety of children from children and their parents, results from parent reports showed that kidney transplant recipients had higher levels of overall anxiety than heart transplant recipients. In addition, 12.8% of children exhibited clinically significant separation anxiety, 7.7% exhibited clinically significant generalized anxiety symptoms, 10.3% exhibited clinically significant panic symptoms, 10.3% exhibited clinically significant social anxiety symptoms, and 5.1% exhibited clinically significant obsessive-compulsive symptoms. Parents also reported higher levels of anxiety symptoms in their children compared with self-reported results.² When needle fear of children was analyzed, girls had more needle fear than boys, with younger children especially having higher level of needle fear.²

Stolz and colleagues²² reported that PTSSs were positively correlated with functioning problems and neuroticism and negatively correlated with conscientiousness. The authors also noted that children who exhibited high levels of neuroticism and functional problems also displayed elevated levels of PTSSs.²²

Conclusions and Recommendations

Posttraumatic stress symptoms are frequently observed in children undergoing pediatric organ transplant, often in response to the life-threatening disease process. Our systematic review showed that, despite having a life-saving surgical procedure, children regard pediatric organ transplant as a traumatic experience. Posttraumatic stress disorder stemming from organ transplant can detrimentally affect children’s QoL, can affect medication adherence, and can lead to various psychosocial problems, such as depression, anxiety, and needle fear. Our review showed the common occurrence of PTSD in pediatric organ transplant recipients, with a significant association between trauma symptoms and QoL.

Addressing PTSD and related psychosocial challenges is imperative in the treatment of pediatric organ transplant patients. Posttraumatic stress symptoms represent a modifiable risk factor for lower self-perceived QoL, making them a crucial target for posttransplant rehabilitation. Incorporating comprehensive mental health care into the transplant journey is essential for promoting the overall well-being of young recipients and their families. By incorporating comprehensive mental health care into the transplant journey, psychiatric nurses can contribute to the overall well-being of young recipients and their families, ensuring that the transformative power of organ transplant extends beyond mere physical survival to encompass psychological resilience and recovery. This systematic review aimed to stimulate dialogue and collaboration among transplant specialists, mental health professionals, and researchers, with the intent to enhance our understanding and the interventions for PTSD within the pediatric transplant population.

Further studies are needed on PTSD in pediatric organ transplant patients, and these studies are needed from different regions of the world. Further clinical studies, such as randomized control trials and evidence-based practices, on PTSD in pediatric organ transplant patients are also recommended.

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