June 17, 2024

National Patient Survey Results now available

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The Immune Deficiency Foundation conducted its sixth National Patient Survey to gather data on the overall status of individuals with PI in the United States. The questions focused on the circumstances of diagnosis with PI, co-occurring conditions, treatments, health-related challenges and quality of life. As expected, 91% of respondents reported serious, unusual, or recurrent infections before their PI diagnosis and 86% chose infections as, at least, one reason why they were tested for PI.

General physical and mental health were measured using the PROMIS Global Health quality of life questions. Poorer physical health could be the result of delayed PI diagnosis or of more co-occurring diagnoses in this group. Results from the survey are available in an interactive online tool, a downloadable report, or a news article detailing the overlap between primary immune diagnoses and autoimmune conditions.