Assessing caregiver knowledge level among families of children with chronic kidney disease

Abstract Background Chronic kidney disease (CKD), characterized by long-term decline in kidney function. Early detection and treatment may be associated with a delay in the progression of the disease. Increased awareness and knowledge on the disease carries great importance. In this study, CKD knowledge level of the caregivers of pediatric CKD patients was assessed. Methods Caregivers of pediatric patients aged 1–21 years with stage 2–5 CKD who had not yet started kidney replacement therapy (KRT), and had at least 1-year follow-up were recruited. CKD knowledge levels were assessed using a questionnaire developed based on a review of the literature. Demographic features potentially associated with knowledge level, the impact of knowledge on the patients’ prognosis and disease progression were investigated. Results 47 pediatric CKD patients, with a mean age of 14 ± 3.9 years, along with their caregivers were included. Average follow-up duration was 6.5 years. Mean eGFR at CKD diagnosis was 58.3 mL/min/1.73 m² (Stage 3a) and mean eGFR during study period was 39.5 mL/min/1.73 m² (Stage 3b). Mean score was 64.9 out of 100 on the questionnaire. Caregivers of patients with early-stage CKD (stages 2–3) had higher educational levels (p = 0.048), caregivers of patients diagnosed at advanced-stage CKD and caregivers with healthcare workers in their family demonstrated higher CKD knowledge levels (p = 0.048 and p = 0.020, respectively). Higher caregiver CKD knowledge levels were associated with reduced school absenteeism (p = 0.020) and better school performance (p = 0.008). Conclusion We believe that targeted educational interventions to improve caregivers’ knowledge may contribute to better quality of patients life.