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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
Intestinal Failure
Parenteral Nutrition
Functional Status
Home Parenteral Nutrition
Child Health Questionnaire
Focus Group
Mixed Methods
Battery Assessment
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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