Primary immunodeficiency diseases: practice among primary care providers and awareness among the general public, United States, 2008.

Waltenburg R, Kobrynski L, Reyes M, Bowen S, Khoury MJ.

Source

Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA. zoy8@cdc.gov

Abstract

PURPOSE:

Primary immunodeficiency disorders (PIDDs) represent a class of genetic diseases of the immune system. Delayed primary immunodeficiency disorder diagnosis leads to increased morbidity and mortality. This study assessed current primary immunodeficiency disorder practice among physicians and awareness among the public.

METHODS:

Primary immunodeficiency disorder practice and awareness data were collected using national surveys of physicians (DocStyles) and the public (HealthStyles).

RESULTS:

Physician respondents (n = 1250) were family practitioners (41%), internists (39%), and pediatricians (20%). Overall, 32% of physicians had diagnosed, treated, or referred a patient with primary immunodeficiency disorder in the last 5 years. Physician specialty was the only significant predictor of having a patient with primary immunodeficiency disorder in unconditional logistic modeling (pediatrician odds ratio = 4.4; internist odds ratio = 1.5; and family practitioner odds ratio = referent). When a possible primary immunodeficiency disorder case presented, 81% of physicians performed laboratory testing and 77% referred the patient to a specialist. Of the general population surveyed (n = 5399), 40% were aware of primary immunodeficiency disorder. Those respondents were more likely to be older, female, white, married (ever), more highly educated, with a higher income level. Most people learned about primary immunodeficiency disorder from media outlets (64% television/radio and 41% magazine/newspaper).

CONCLUSION:

Additional primary immunodeficiency disorder educational efforts, which target both physicians and the public, may be needed because increased primary immunodeficiency disorder awareness may lead to earlier diagnosis and less morbidity and mortality.