Health-related quality of life functioning over a 2-year period in children with end-stage renal disease

Area of Science:

• Pediatric Nephrology
• Health-Related Quality of Life (HRQOL)
• Chronic Kidney Disease (CKD) and End-Stage Renal Disease (ESRD)

Background:

• Optimal care for pediatric chronic kidney disease/end-stage renal disease (CKD/ESRD) necessitates integrating health-related quality of life (HRQOL) assessment.
• Understanding longitudinal HRQOL changes is crucial for comprehensive patient management.

Purpose of the Study:

• To report the first longitudinal data on patient and proxy HRQOL ratings in pediatric ESRD patients.
• To analyze associations between demographics, medical variables, and HRQOL scores over approximately two years.

Main Methods:

• Utilized the PedsQL(TM)4.0 (global) and PedsQL(TM)3.0 ESRD Module (disease-specific) for HRQOL assessment.
• Collected patient and parent/proxy ratings over four assessment periods (approx. 2 years).
• Employed general linear mixed modeling to analyze data from 53 pediatric ESRD patients (ages 2-18).

Main Results:

• Patient self-ratings for global health, physical activity, emotional, social, and disease-specific worry domains were higher (better) than parent proxy-ratings.
• Patients on dialysis longer, especially females, reported poorer emotional functioning and more physical appearance concerns.
• Parents rated older children and those on dialysis longer as functioning worse across multiple domains, with a noted decline in school functioning over time.

Conclusions:

• Patient and parent/proxy HRQOL ratings differ, underscoring the importance of collecting both perspectives for pediatric ESRD care.
• Longer dialysis duration and female sex were associated with poorer HRQOL in patients.
• Parental perception of burden and functioning, particularly in school, evolved over time and was influenced by ESRD history.