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|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|
Home Parenteral Nutrition
Child Health Questionnaire
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.|
|Appears in Collections:||Master|
The Institute of Health Policy, Management and Evaluation - Master theses
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