2023 National Patient Survey

Who took the survey?

1,177 individuals completed the survey between January and April 2023. Note that because not every respondent answered every question, the number of respondents who answered each question is given for each analysis (n=).

• The most reported diagnoses were common variable immune deficiency (CVID; 62%), hypogammaglobulinemia (10%), and specific antibody deficiency (9%).
• 93% of patients identified as white, 3% identified as two or more races or ethnicities, 2% identified as Hispanic/Latino, 1% identified as Black/American African, 0.5% identified as American Indian/Alaska Native, and 0.2% identified as Asian/Pacific Islander.
• Patients ranged in age from 5-91 years old, with a median age of 61 years old.
• 13.9% of patients were male at birth, while 86% were female and 0.1% were intersex at birth.

Explore survey results

Explore select 2023 National Patient Survey results using this interactive dashboard (note that the dashboard works best on laptop or desktop computers). How to use the dashboard:

• Use the slider at the bottom right to zoom in or the double-headed diagonal arrow to view full screen.
• Navigate through three pages of data (Getting diagnosed, Treatment, and Health and other conditions) using the arrows in the bottom grey bar.
• Interested in a particular group of respondents? Filter the data on each page using the navy blue dropdown menus at the top. PROMIS General Mental and Physical Health scores are binned for the filters:
  • PROMIS General Mental Health scores: Poor < 29; Fair = 29-39.9; Good = 40-47.9; Very Good = 48-55.9; Excellent > 55.9.
  • PROMIS General Physical Health scores: Poor < 35; Fair = 35-41.9; Good = 42-49.9; Very Good = 50-57.9; Excellent > 57.9.