Response to Quality of Life Surveying: An Analysis of Patients with Wiskott-Aldrich Syndrome

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Bani-Hashemi, Tara
Quality of Life, Wiskott-Aldrich Syndrome, PID
artifact description
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.

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