Study of the association between generic and disease-specific quality of life and behavior problems in pediatric patients with chronic kidney disease stage 3 or higher and the quality of life and mental health of their primary caregivers

Background Chronic kidney disease (CKD) can affect quality of life and mental health of patients and their primary caregivers (PCs) in different disease stages. Methods This prospective, cross-sectional, descriptive, comparative, and analytical study of patients with stage 3-5 CKD, aged 8-18 years, assesses the association between patients' general and disease-specific health-related quality of life (HRQOL) and behavioral problems and their PCs' QoL and mental health status. PedsQL 4.0, PedsQL ESRD, CBCL, and YSR questionnaires were used to evaluate 80 patients while their PCs were assessed by SF-36 and MINI questionnaires. The study participants were divided into three groups: G1: stage 3-4 CKD, G2: peritoneal dialysis and hemodialysis, and G3: kidney transplantation. Results Lower indexes in PedsQL 4.0 and PedsQL ESRD were demonstrated in G2 patients. No deviant internalizing and/or externalizing conducts were shown by the CBCL questionnaire while the YSR questionnaire demonstrated significant differences in all domains with higher scores in G2 patients without reaching clinical range for individual syndromes. G3 PCs presented the lowest SF-36 scores and the highest occurrence of psychiatric diagnoses, according to MINI, when compared to other PCs. Parallelism was found between scores of PedsQL 4.0 and PedsQL ESRD with tendency to higher scores in the PC's view compared to the patient's view. Conclusions CKD affects HRQOL of patients and their PCs, as well as patients' behavior problems and their PCs' mental health. PCs' perceptions of patients' QOL and behavioral problems may be related to their mental health status and QOL self-perceptions.