Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure
This study proposes to quantify and describe the quality of life of children with intestinal failure, and to identify the medical and socio-economic factors that impact this quality of life, using data from multiple multidisciplinary intestinal failure centers across the United States and Canada specializing in the care of these participants.
• Participants will be followed in a participating institution's intestinal rehabilitation program
• Participants will have a diagnosis of intestinal failure due to functional or structural intestinal dysfunction with current or prior history of specialized nutritional support (parenteral nutrition requirement for 60 out of 74 consecutive days)
• Participants will be age 6 months to 25 years old.
• Parents/caregivers must be able to complete questionnaire without assistance.
• English or Spanish speaking