According to our study, the physical, psychosocial, and total health quality of life were worse in the patient group than in the control group. Child-traumatic stress scores were significantly higher in patient group than in the control group. ‘’Communication’’problems were much more common in family of the patient group than in the control group.
Chronic childhood illnesses and their treatment represent a major source of chronic stress for patients and their parents, which can lead to emotional and behavioral problems and non-adherence to treatment [25]. Although it was initially believed to be solely related to wars and natural disasters, a variety of stressors including life-threatening diseases, was suggested to lead to PTSD (28). Studies have shown a high prevalence of self-reported PTSD in children who survive with a solid organ transplant, and these trauma symptoms are significantly linked to the children's self-assessed QoL [26]. Higher PTSD rates were also shown in pediatric LT recipients [7, 8, 27]. In line with these results, in our study, child-traumatic stress scores were significantly higher in liver transplant recipients.
A review showed that PTSD rates are also high among parents of candidates and recipients of solid organ transplants. Studies were conducted primarily on caregivers of kidney and heart transplant recipients [28]. In one study, caregivers of pediatric recipients of solid organ transplants did not report increased levels of depression or anxiety but reported increased PTSD symptoms [29]. In another study, caregivers of pediatric solid organ recipients reported lower rates of clinical PTSD (11.3%) and this study found a low association between child and caregiver PTSD [30]. Our study is one of the few studies investigating the post-traumatic stress in mothers of pediatric liver transplant recipients. In our study, however, there were no significant differences between groups in terms of maternal traumatic stress scores. On the other hand, maternal traumatic stress scores also had a positive correlation with child traumatic stress scores and a negative correlation with child-psychosocial health scores. These results mean that the mother’s traumatic stress adversely affected the child’s psychological status.
Liver transplantation in childhood was suggested to have a negative impact on various domains of HRQoL[9]. A number of studies included within a review suggest that HRQoL is lower in pediatric LT recipients than healthy children, but similar to children with chronic diseases or other pediatric solid organ transplant recipients [31]. In our previous study, we investigated depression, anxiety, PTSD, and QoL in LT recipients and compared those variables with LT candidates and healthy controls. We had found that the child report-QoL scores were significantly lower in both the pre-transplant and post-transplant groups as compared with the healthy controls [8]. In line with these results, in the present study, we found that physical, psychosocial, and total health scores were significantly lower in the patient group than in the control group. And also, there was a negative correlation between physical health scores and child traumatic stress scores, suggesting that traumatic stress negatively affects the physical QoL of the patients.
Parents of children with LT need to be able to perform numerous roles and adapt to alterations in their child’s care. They go through the process of learning how to manage the disease, from living with someone with existing liver disease, to how to care for their child with LT [32]. Pediatric solid organ transplantation is also related with heightened family stress and burden throughout the transplant procedure that are associated with poorer adherence to post-transplant immunosuppressant medications [28]. In the present study, communication problems were much more shown in the patient group than in the control group which reflects communication problems in families with pediatric LT. Maternal traumatic stress scores also had a positive correlation with the some of subscales of FAD such as communication, roles, affective responsiveness, and general functioning suggesting that maternal traumatic stress adversely affected family functioning. Families who exhibit deficiencies in communication and sharing responsibility for family duties may have difficulty coping with stressful times [33].
One of the strengths of this study is that a relatively large sample size of pediatric liver transplant recipients and includes a healthy control group. Besides evaluating the psychological status of the child, we also investigated the mothers and family functioning. There are also some limitations of this study. First, we did not have a control group including other chronic illnesses. Second, we did not assess other psychiatric diagnoses beyond depression and PTSD, and the presence of those disorders was based on self-report measures. Additionally, the study was limited to one center. Multi-center studies would be better to further validate the findings obtained.