Patients' Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy

Overview

Journal J Patient Exp

Specialty Health Services

Date 2020 Mar 5

PMID 32128382

Citations 6

Authors

Mary Grace Flaherty

Megan Threats

Samantha J Kaplan

Affiliations

Soon will be listed here.

Abstract

Background: Alpha-gal food allergy is a life-threatening, newly discovered condition with limited presence in authoritative information sources. Sufferers seeking diagnosis are likely to encounter clinicians unfamiliar with the condition.

Objective: To understand information practices of individuals diagnosed with alpha-gal allergy, how they obtained diagnosis, and their perceptions of health-care providers' awareness of the condition.

Methods: Semistructured interviews with open- and closed-ended questions were completed with a chronological systematic sample of 28 adults (11% of alpha-gal clinic patients at the time) diagnosed with alpha-gal allergy and treated at University of North Carolina Allergy and Immunology Clinic.

Results: The majority of patients determined they had alpha-gal allergy through nontraditional health information channels. Three-quarters of patients rated their primary care provider as having little to no knowledge. In 25 specialists' encounters, 23 were rated as having little to no knowledge.

Conclusion: With new conditions, information is often available through informal networks before appearing in the vetted medical literature. In this study, social connections were the primary pathway to successful diagnosis. Health practitioners need to develop mechanisms to understand that process.

Citing Articles

Emerging Trends in Information-Seeking Behavior for Alpha-Gal Syndrome: Infodemiology Study Using Time Series and Content Analysis.

Romeiser J, Jusko N, Williams A J Med Internet Res. 2024; 26:e49928.

PMID: 38717813 PMC: 11112475. DOI: 10.2196/49928.

Health Care Provider Knowledge Regarding Alpha-gal Syndrome - United States, March-May 2022.

Carpenter A, Drexler N, McCormick D, Thompson J, Kersh G, Commins S MMWR Morb Mortal Wkly Rep. 2023; 72(30):809-814.

PMID: 37498792 PMC: 10390085. DOI: 10.15585/mmwr.mm7230a1.

How do parents access, appraise, and apply health information on early childhood allergy prevention? A focus group and interview study.

Lander J, Bitzer E, von Sommoggy J, Pawellek M, Altawil H, John C Front Public Health. 2023; 11:1123107.

PMID: 37139377 PMC: 10149846. DOI: 10.3389/fpubh.2023.1123107.

Knowledge, attitudes, and practices of Illinois medical professionals related to ticks and tick-borne disease.

Carson D, Kopsco H, Gronemeyer P, Mateus-Pinilla N, Smith G, Sandstrom E One Health. 2022; 15:100424.

PMID: 36277108 PMC: 9582564. DOI: 10.1016/j.onehlt.2022.100424.

Initiating Psychotropic Treatment in a Patient With Alpha-Gal Syndrome.

Narlesky M, Palting A, Sukpraprut-Braaten S, Powell A, Strayhan R Cureus. 2022; 14(8):e28443.

PMID: 36176862 PMC: 9512307. DOI: 10.7759/cureus.28443.

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