Caregiver health-related quality of life 1 year following pediatric gastrostomy tube placement

INTRODUCTION: Children undergoing gastrostomy tube placement often have complex medical conditions that can increase caregiver burden and decrease caregiver health-related quality of life. Our goal was to identify changes in health-related quality of life over a 12-month period in the caregivers of these patients. METHODS: We performed a prospective cohort study of pediatric patients undergoing gastrostomy tube placement. Using the PedsQL 2.0 Family Impact Module, we surveyed the caregivers of these patients at baseline (prior to gastrostomy tube placement) and 1 month, 3 months, 6 months, and 12 months following gastrostomy tube placement. We administered the same survey, at baseline only, to a control group composed of caregivers of pediatric patients undergoing elective hernia repair. RESULTS: We enrolled 130 patients undergoing gastrostomy tube placement and 35 patients undergoing hernia repair. At baseline, these caregivers had significantly lower total health-related quality of life compared to caregivers of children undergoing hernia repair (47.4 ± 16.1 vs 86.0 ± 15.6, P < .001). In the first year after gastrostomy tube placement, caregivers had significant increases in total health-related quality of life (P < .01) and the physical functioning (P < .05), communication (P < .05), worry (P < .05), and daily activities (P < .001) subdomains. A within-subjects analysis comparing scores at baseline and 12 months revealed a significant increase in the total health-related quality of life score over this 1-year period (60.7 ± 18.9 vs 47.4 ± 16.1, P < .01). The total health-related quality of life at 12 months, however, remained significantly lower compared to controls (60.7 ± 18.9 vs 86.0 ± 15.6, P < .001). CONCLUSION: Our findings highlight the ongoing caregiver burden associated with children undergoing gastrostomy tube placement and provide evidence of the need for efforts directed at caregiver support post gastrostomy tube placement.