Emotional Repercussions and Quality of Life in Children and Adolescents Undergoing Hemodialysis or After Kidney Transplantation

Abstract

Objective: To investigate the emotional repercussions and quality of life (QOL) associated with end-stage kidney disease (ESKD) in children and adolescents undergoing hemodialysis or a kidney transplant (TX). Methods: We conducted a quantitative-qualitative study. 48 children and adolescents with ESKD were interviewed; half of them underwent hemodialysis treatment, and the other half had a kidney transplantation. Their respective 48 caregivers also participated in the study. The questionnaire involved both the Pediatric Quality of Life Inventory and a thematic story-drawing tool. An analysis of the QOL questionnaire’s results was done by comparing the sum of points between groups and the theme-based story-drawing consisted of interpreting the data contained in the material using Freudian and Lacanian theories. Results: In the QOL questionnaires, the total score was higher in the transplanted patients and in their caregivers, suggesting a perception of better QOL after kidney transplantation. In the specific aspects of the questionnaire, physical capacity was considered superior by children who underwent transplants and their caregivers. There were no differences between the groups in the emotional, social and school aspects. However, the caregivers of the patients who had a transplant perceived a significant difference in QOL in the school aspect. In the thematic story-drawings, emotional suffering in the two analyzed groups was evidenced regardless of the treatment. Conclusions: Despite the questionnaire results suggesting that transplantation does improve some aspects of QOL, there were no differences observed between kidney replacement therapies regarding the emotional repercussion of chronic kidney disease.

Quality of life of children and adolescents with chronic kidney disease: A review of the literature

“…[11] There is a perception that there is improvement in the quality of life of children and adolescents, and also in their families as well, after kidney transplantation. This is actually proven through the study of Rotella et al (2019). In the quality-of-life questionnaires, the overall score was higher in transplant patients and their caregivers, a finding that suggests a recovery in the quality of life of children with kidney disease after receiving a transplant.…”

“…But caregivers of transplant patients perceived a significant difference in their children's quality of life at school. [10]…”

Health‐related quality of life for pediatric patients with end‐stage kidney disease: A systematic review and meta‐analysis of the Pediatric Quality of Life Inventory (PedsQL)

“…43 Another explanation for this may be the similar challenges ESRD children experience, such as feeling different from their peers, particularly due to visible signs of their condition or physical changes like growth delays or bone deformities. 44 These factors can contribute to a sense of embarrassment and further isolation, affecting both dialysis and transplant patients similarly in terms of their emotional, social, and school experiences. Due to social or healthcare system-related delays in pediatric transplants, notable psychosocial HRQoL differences between the two groups may not be evident in certain regions.…”

“…ESRD patients on chronic dialysis adapt and cope with their treatment and have the opportunity to see/interact with other patients like them in dialysis units, which may explain their higher self‐reported psychosocial HRQoL 43 . Another explanation for this may be the similar challenges ESRD children experience, such as feeling different from their peers, particularly due to visible signs of their condition or physical changes like growth delays or bone deformities 44 . These factors can contribute to a sense of embarrassment and further isolation, affecting both dialysis and transplant patients similarly in terms of their emotional, social, and school experiences.…”

“…Clinical features of the pediatric ESRD populations provide insight into underlying genetic diseases in patients with ESRD. In pediatric patients, congenital anomalies of the kidney and urinary tract (CAKUT), renal dysplasia, glomerular diseases, and cystic kidney diseases are the most common underlying genetic conditions resulting in ESRD 14,28,44 . Our analysis identified five studies including significant non‐renal comorbidities associated with ESRD, comprising 31% of pediatric patients from this sub‐population 8,31,32,35,48 .…”