Date of Graduation

Spring 5-12-2017

Document Type

Project

Degree Name

Master of Public Health (MPH)

College/School

School of Nursing and Health Professions

Abstract

Patient-reported outcomes and surveying has increased in clinical settings in order to assess outcomes and patient health status. However, there is a lack of these assessments from a pediatric standpoint, an inpatient standpoint, and family perspective. In addition to health status and overall clinic experience, expanding the self-reported evaluation to include quality of life on physical and psychosocial levels will provide a more comprehensive evaluation of the patients’ health services. The PedsQL ™ scale scores four domains: physical, emotional, social, and school/work functioning. It includes a parent-proxy report as well as self-report for patients ages 5 to 18 years. Infant scales are also available for children 1-24 months of age that include a parent-proxy report.

The Wiskott-Aldrich Foundation aims to improve quality of life (QoL) surveying to best reflect patient and family sentiments for patients with the immunodeficiency disorder, Wiskott-Aldrich Syndrome (WAS). WAS is a genetically inherited immunodeficiency disease that severely suppresses the immune system to make the patient dangerously susceptible to autoimmune disorders and malignancies. The comparison of family impact and PedsQL™ can paint a picture of the family’s coping with WAS and what they may need beyond clinical treatment of WAS.