POS-742 HEALTH RELATED QUALITY OF LIFE (HRQOL) IN PAEDIATRIC CHRONIC KIDNEY DISEASE (CKD) AND CAREGIVER BURDEN (CB) – A PROSPECTIVE MIXED-METHODS STUDY

Abstract

CKD reduces the HRQoL of affected children and is associated with burden on caregivers. Data on HRQoL and CB in CKD from high income countries may not reflect realities of patients and families in low resource settings. Despite our centre’s expertise in providing paediatric CKD care, families frequently discontinue treatment for their child, resulting in poor patient outcomes and ethical challenges to the healthcare team. There is no data regarding HRQoL and CB for paediatric CKD in India. We aimed to measure HRQoL in children with advanced CKD and assess CB in primary caregivers by quantitative scoring and qualitative analysis of novel factors pertinent to our low resource setting. A prospective study conducted at a stand-alone, low-cost, tertiary paediatric nephrology centre with a large referral base. Patients: All children (1-18 yrs) with CKD (Stage 4,5) on treatment >3 months. Caregivers: The parent/grandparent identified by family as patient’s primary medical caregiver. HRQoL Tool: validated PedsQL™ Version 4.0. Patient scores were compared with published control data mean scores [Indian (87.4 ± 11.1) and international (83.9 ± 12.5)]. PedsQL ESRD Module, Version 3.0 was used and compared with previous reported data (69.2 ± 23.2). HRQoL scores were standardised by minimum-maximum normalization (range 0 – 1). ‘Worse’ HRQoL = standardized score </= 0.5. CB Tool: validated Pediatric Renal Caregiver Burden Scale and compared with previous data (120 ± 16.4). ‘High’ CB = CB scores>our study population mean. Reflexive thematic analysis of qualitative data (in-depth audiotaped interviews) was performed to capture family-prioritized factors affecting HRQoL and CB. Patients: 40 CKD patients (26 male, median age 11 yrs, 30 on dialysis) and caregivers (38 mothers) were included. Families (65% lower middle/upper lower SES) had median income of INR 18000/month. Patient HRQoL mean scores (63.1 ± 16.7) were lower than controls and previous high income country paediatric CKD data (73.72 ± 17.42). The physical domain contributed significantly to worse Qol. ‘Worse’ HRQoL was associated with inability to attend school (65% vs 13%, p = 0.001), anaemia (57% vs 23%, p=0.031), longer duration of illness (55% vs 15%, p=0.008) and dialysis (58% vs 18%, p=0.034) but not with low SES (p>0.5). Mean scores in ESRD module (57.2 ± 13.2) were low and social life (family/peer interaction) was the worst affected domain (39.9 ± 18.2). Low ESRD module scores were associated with school absence but not with modality or duration on dialysis. Primary Caregiver burdenmean (143.9 ± 17.1) was higher than previously reported. ‘High’ CB was associated with CKD Stage 5 vs stage 4 but was similar for HD vs CAPD. Parent CB inversely correlated with child’s HRQoL (r= - 0.58, p=0.001). Qualitative analysis themes generated were “catastrophic healthcare expenditure”, “mental stress and sleep disturbance” and “extreme social isolation” especially in those doing dialysis. Identified themes and illustrative quotes are depicted in figure 1. Fig1: Thematic schema derived from analysis of in-depth caregiver interviews Children with CKD have low HRQoL and their caregivers, high CB. Factors contributing to CB were unique to our low resource settings, and not elucidated by scoring tools alone. We intend to use these findings to improve counseling and provide better social and financial support to families.