RESUMEN
Kidney failure has a negative impact on both children and families' quality of life (QOL). We evaluated the burden of home peritoneal dialysis (PD) using two local questionnaires and the French version of PedsQL3.0 end-stage kidney disease module and family impact module. Data are expressed as median (min-max). We reviewed the charts of 12 patients, at a median age of 8.8 (1.2-16.7) years, undergoing maintenance PD for 8 (1-42) months. Parathyroid hormone and haemoglobin levels were 215 (17-606) ng/L and 117 (104-141) g/L, respectively. Patients were taking 7 (3-10) different medications, corresponding to 9 (4-17) doses per day. The PD fluid volume per cycle was 1035 (723-1348) mL/m2 with a dwell duration of 75 (60-90) min and 6 (5-9) cycles per night. On a 2-week period, there were 2 (1-11) alarms per night resulting in 2 (0-8) times waking up and getting out of the bed for the parent(s); families were late 1 (0-11) times for school or parent's work. The time spent to connect and disconnect the cycler to the patient was 30 (12-46) min per day. QOL score on child self-report was correlated positively with weight percentile for age (R = 0.857; p = 0.014) and negatively with the number of siblings (R = -0.917; p = 0.004). The children QOL was evaluated higher by self-report scores: 77 (59-87) than by parent-proxy report scores: 53 (29-74), respectively (p = 0.028). PD children/teenagers and their caregivers can feel overwhelmed by the daily home therapy. Self-report and parent-proxy report QOL were significantly different, and it is questionable whether the parent-proxy report QOL relies rather on parents' own QOL.
