ESPN 50th Annual Meeting

ESPN 2017


 
HEALTH-RELATED QUALITY OF LIFE IN CHILDREN WITH CHRONIC KIDNEY DISEASE
MATTHEW HARMER 1 RODNEY GILBERT 1 STEVE WOOTTON 2 CAROLINE ANDERSON 1

1- SOUTHAMPTON CHILDRENS HOSPITAL
2- UNIVERSITY OF SOUTHAMPTON
 
Introduction:

Health-related quality of life (HRQoL) measures a patient’s broader health status.

Material and methods:

Families of children with Chronic Kidney Disease (CKD) were asked to complete the self-reporting and parent-proxy components of the Paediatric Quality of life Inventory (version 4.0 – English (U.K.)).

Results:

60 families that were recruited (46 conservatively managed). Overall scores from this cohort were lower than the previously published control data, but conservatively managed patient scores were similar to healthy controls, and higher than previously published cohorts from Brazil, Canada and the USA. There was no correlation with estimated glomerular filtration rate (eGFR) or duration of illness and any domain score. Disparity was found in the emotional domain between self-reported and parent-proxy questionnaires (p=0.005), but on subgroup analysis by age-group, only remained in those aged 5 – 7 years (p=0.046). Analysis of only those receiving conservative management demonstrated a similar pattern. 10 children had received functioning renal transplant. Comparison between those that had a renal transplant and those that did not, did not demonstrate any difference in scores in the self-rated questionnaire, but demonstrated lower parent-proxy scores in those with a graft.

Conclusions:

These UK data were not concordant with previously published PedsQL scores in conservatively managed cohorts. The reasons for this need exploration, but may be due to populations receiving different healthcare services, and/or the small, relatively homogenous population of this cohort. Parents tended to score their child lower than the child themselves in the emotional domain. This data contradicts previous literature that suggests that discordance should increase with the age. HRQoL tools have the potential to be used to evaluate services, as screening tools, and to identify areas to be explored during consultation. HRQoL assessment should be considered for introduction into clinical care for ongoing holistic care of children with chronic illnesses, including CKD.