This study found that adults after KRT during childhood in Switzerland did not have increased psychological distress compared to the general population. Only 10% of the study population had clinically relevant levels of psychological distress which is comparable to the Swiss general population. This suggests that in Switzerland, adults, who had received a kidney transplant during childhood, are not at increased risk for depression, somatization, or anxiety. Adults after KRT during childhood, who were unemployed and those treated with psychotropic drugs reported higher levels of psychological distress.
Comparing our data with other studies is challenging, as the patient population varies between studies in terms of medical situation (chronic renal failure, dialysis or transplantation) and age at follow-up (children, adolescents or adults). Many previous studies focused on children and adolescents. A study including 28 patients aged 9–18 years with chronic kidney disease stage 1–4, not yet dialyzed or transplanted, reported more separation anxiety and depressive symptoms compared to healthy children, but resilience was similar in both groups [9]. An Egyptian study including 19 dialyzed children observed a high prevalence of psychiatric disorders (68.4%) and depression (26.3%) [7]. In a Peruvian evaluation of 67 children and adolescents (age 8–18 years) on dialysis, depressive symptoms occurred more frequently in females and were associated with weekly Kt/V. But the type of dialysis showed no association with the occurrence of depressive symptoms [8]. This contrasts with our results, where there was no difference between male and female participants. However, comparability with our study is limited by different methods, outcome definitions, and the older age of our cohort.
Only few studies focused on transplanted children and adolescents. An American study of 44 children aged 9–18 years found significant symptoms of depression in 30% with higher scores among patients aged ≥ 13 years. However, their study population was too small to compare different groups of kidney replacement status, although longstanding kidney disease was declared to be a risk factor for depression [11]. A very high depression rate of 64% in children and adolescents with various stages of KRT was described by Cuellar et al [26], whereas another study indicated a high prevalence of sleep disturbances ranging from 77 to 85% in children with KRT [10].
Taken together, there is some evidence in the literature that children with chronic kidney failure might express more symptoms of depression and therefore suffer from psychological distress. Our study indicates that early psychological problems might normalise with time after KRT.
As far as we know our study is the first to analyze psychological distress using the BSI in adults who had undergone kidney replacement therapy during childhood in Switzerland. Two studies found that adults suffer from various states of depression when being dialyzed or after kidney transplantation depending on type of dialysis, type of transplant and duration of disease [27, 28]. At a median age of 25.7 years, 25 out of 42 adults after pediatric transplantation stated that they felt anxiety or were depressed in a study from Kärrfelt et al. [29]. On the other hand, it was reported that psychological distress and post-traumatic stress disorder could result in “post traumatic growth”, defined as a positive and motivating psychological chance leading to positive coping strategies [15].
Comparisons with studies including other patient populations with childhood onset health conditions are difficult due to the inherent differences in the severity, prognosis, and long-term outcomes. A study including adolescents after heart, lung or liver transplantation indicated impairment in several areas such as anxiety, disappointment, or social adjustment. The individuals also reported about the obligation to show gratitude towards the donor, pressure to take good care of the transplant and, in the case of a living donation, fear for the donor due to the possible health risks [12]. Also children with type 1 and 2 diabetes seem to experience increased anxiety and depression [14]. Swiss childhood cancer survivors, also evaluated using the BSI, indicated a lower T score in the GSI, in obsessive-compulsive tendencies, anxiety and somatization compared with the German norm population. However, it was found that participants had a higher risk of suffering from severe psychological stress in comparison to the norm population [30]. Comparing these results with our study population indicates the difference between cancer survivors and patients with KRT. Cancer survivors usually are cured from their disease and might try to leave it behind, while individuals after kidney transplantation face a lifelong dependency on regular medical check-ups, medication to prevent graft rejection and a high probability of needing additional KRT again later in life.
A limitation of our study is the relatively small sample size limiting statistical power for subgroup comparisons, especially regarding clinical and sociodemographic characteristics. Additionally, our study included only German speaking patients, so results may not be for all Switzerland. Furthermore, data were collected between 2021 and 2022 whereas data of the general Swiss population were obtained between 2015 and 2016. Differences caused by broader circumstances (e.g., COVID-19 pandemic) could not be avoided or accounted for.
The strength of our study is the use of a representative comparison sample from the Swiss general population that completed the same questions on psychological distress. Further, our study included adult patients after KRT during childhood on average 39 years of age providing long-term follow-up information on this population. Another strength refers to the use of high-quality clinical information based on medical records from the SPRR.
Chronic kidney disease in children and adults does have a massive long-term impact on patients which leads to a life-long dependence on medical support. This may intuitively interfere with their psychological well-being and affect social, educational, and family life. Our results therefore might surprise, but underline the fact, that kidney transplantation programs in children and adolescents are successful not only in terms of survival of patient and graft, controllable side effects of the treatment and HrQoL, but also in terms of psychological distress. Although carrying the burden of a chronic disease, adults after KRT during childhood appear to be psychologically well adjusted in Switzerland. This fact should encourage pediatric nephrologists to sustain their daily efforts treating these patients. Furthermore, it should motivate adult nephrologists who care for them later on in adulthood.
In conclusion, our study indicates similar levels of psychological distress in 80 adults after pediatric kidney replacement therapy in comparison to the Swiss general population. Our data are encouraging for pediatric nephrologists and generally indicate favorable psychological outcomes in the long-term. Beside the well-known excellent somatic outcome, these patients can achieve a psychological healthy life many decades after diagnosis of chronic kidney failure.