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Please use this identifier to cite or link to this item: http://hdl.handle.net/1807/25716

Title: Quality of Life in Pediatric Patients with Intestinal Failure on Home Parenteral Nutrition
Authors: Carricato, Megan
Advisor: Wales, Paul W.
Department: Health Policy, Management and Evaluation
Keywords: Quality of Life
Pediatrics
Intestinal Failure
Parenteral Nutrition
Functional Status
Home Parenteral Nutrition
Child Health Questionnaire
PedsQL
Focus Group
Mixed Methods
Nutrition
Battery Assessment
CHQ
Pediatric Quality of Life Questionnaire
Issue Date: 6-Jan-2011
Abstract: Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx.
URI: http://hdl.handle.net/1807/25716
Appears in Collections:Master
The Institute of Health Policy, Management and Evaluation - Master theses

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