Renal CPD课件.pptVIP

Self-reported quality of life in children and young people with chronic kidney disease Nottingham University Hospitals NHS Trust Evelina Children’s, St Thomas’, Guy’s St Thomas’ Royal Victoria, Newcastle Alder Hey Royal Belfast Birmingham RHSC Background RRT demanding, time-consuming, invasive ? high demands, daily management, can be restrictive Rx at expense of QoL? GCQ Generic discrepancy measure of psychosocial QoL: Perceived self vs. Preferred self Designed to be completed by child and ‘ease of use’ Developed using constructs provided by children themselves (rather than those adults perceive as relevant) GCQ 25 constructs Social aspects, health, school, home, etc. Gender specific Sample question to clarify understanding 5 point scale Discrepancy ? QoL ? higher score reflect higher QoL GCQ Normative data for general population 6 – 14 yrs. No significant differences in QoL for age, gender or socio-economic status with acceptable reliability Has been used 4/5yo to late adolescence Method 6 – 18 yrs. CKD categories 3 – 5 Educated in English No change in Rx within the previous three months Method Recruited from 7/13 units 6 non-participating units – no clinical psychology or medical support Routine out-pt appt. or after 1hr of stable HD Results No significant differences in QoL scores between units No significant difference b/tw age groups and gender (6-10, 11-14, 15-18 yrs.) No significant difference b/tw treatment modality Results Discussion Confirm findings of pilot study Not saying all CYP with CKD are happy – levels of difference in mood more favourable tolerable Results Discussion Different reference frame? But increased QoL not from lower expectations of self as the renal popltn. actually rate selves higher than general popltn. (Table 4) Results Discussion “life as a chronic renal patient is not as bad as it sounds, compared to other illness such as cancer, heart failure etc. For me I learnt how valuable life is and hope others do.” Results