A qualitative study to explore the burden of disease in activated phosphoinositide 3-kinase delta syndrome (APDS)
Ian Hitchcock,
Hanna Skrobanski,
Elina Matter
et al.
Abstract:Background
Activated phosphoinositide 3-kinase delta syndrome (APDS) is an ultra-rare primary immunodeficiency, with only 256 cases reported globally. This study aimed to explore the disease burden of APDS from the perspective of individuals with APDS and their caregivers.
Methods
Qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers, to explore the symptoms and health-related quality of life (… Show more
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