Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure
Boston Children's Hospital
Summary
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.
Description
Health related quality of life is becoming an increasingly important topic as medical advancements continue to increase life expectancies in various illnesses. Quality of life (QoL) encompasses the physical, psychological, and social well-being of a person. Studies focusing on health related QoL show that providers have a limited understanding of the QoL of their patients, demonstrating a need for further research. Mortality rates in pediatric intestinal failure (PIF) have significantly dropped over the past 3-4 decades and long-term morbidity rather than survival has come into focus as the ou…
Eligibility
- Age range
- 0–25 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * 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 Exclusion Criteria: * Participants aged less than 6 months or great…
Locations (14)
- Children's of AlabamaBirmingham, Alabama
- Children's Hospital ColoradoAurora, Colorado
- Connecticut Children's Medical CenterHartford, Connecticut
- Lurie Children's HospitalChicago, Illinois
- Boston Children's HospitalBoston, Massachusetts
- C.S. Mott Children's HospitalAnn Arbor, Michigan