Chest
Clinical InvestigationsDelay in Diagnosis of α1-Antitrypsin Deficiency: A Continuing Problem
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Materials and Methods
A four-page mail survey was commissioned in 2003 by the three aforementioned patient-based organizations for development and distribution by an international research organization (Schulman, Ronca, and Bucuvalas, Inc.). Confidentiality agreements between Schulman, Ronca, and Bucuvalas, Inc. and the three sponsoring organizations permitted construction of a single, combined mailing list of 5,222 AAT-deficient individuals that omitted duplicates. Accompanied by a cover letter that explained the
Results
By 2 months after the initial mailing, responses to the 2003 survey were received from 1,953 individuals (37.4% response rate). Table 1 summarizes the demographic and presenting characteristics of respondents in this recent survey and compares these individuals to respondents in the 1994 survey cohort. As shown, 49% of respondents to the 2003 survey were female, and the mean ± SD age was 53.1 ± 13.2 years. Fifty-two percent reported having emphysema, 38% reported chronic bronchitis, and 8%
Discussion
The main findings in this study regarding the interval between first symptom of AAT and first diagnosis of AAT deficiency are as follows: (1) the diagnostic delay interval remains long without evidence of significant shortening over 2 decades (ie, from before 1980 to after 2000); in fact, the diagnostic delay interval increased over time in both surveys; (2) while the diagnostic delay interval increased over 2 decades for both cohorts, the overall diagnostic delay interval was significantly
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