Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy
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...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2020-02-01
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| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/2374373518808310 |
| _version_ | 1819000961488650240 |
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| author | Mary Grace Flaherty PhD, MLS, MS Megan Threats PhD(c) Samantha J. Kaplan PhD, MLIS |
| author_facet | Mary Grace Flaherty PhD, MLS, MS Megan Threats PhD(c) Samantha J. Kaplan PhD, MLIS |
| author_sort | Mary Grace Flaherty PhD, MLS, MS |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-20T22:41:38Z |
| format | Article |
| id | doaj.art-7bb5f5969fc34e54b1870e7360b41549 |
| institution | Directory Open Access Journal |
| issn | 2374-3735 2374-3743 |
| language | English |
| last_indexed | 2024-12-20T22:41:38Z |
| publishDate | 2020-02-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj.art-7bb5f5969fc34e54b1870e7360b415492022-12-21T19:24:27ZengSAGE PublishingJournal of Patient Experience2374-37352374-37432020-02-01710.1177/2374373518808310Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food AllergyMary Grace Flaherty PhD, MLS, MS0Megan Threats PhD(c)1Samantha J. Kaplan PhD, MLIS2 School of Information and Library Science, University of North Carolina, Chapel Hill, NC, USA School of Information and Library Science, University of North Carolina, Chapel Hill, NC, USA School of Information and Library Science, University of North Carolina, Chapel Hill, NC, USABackground: 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.https://doi.org/10.1177/2374373518808310 |
| spellingShingle | Mary Grace Flaherty PhD, MLS, MS Megan Threats PhD(c) Samantha J. Kaplan PhD, MLIS Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy Journal of Patient Experience |
| title | Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy |
| title_full | Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy |
| title_fullStr | Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy |
| title_full_unstemmed | Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy |
| title_short | Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy |
| title_sort | patients health information practices and perceptions of provider knowledge in the case of the newly discovered alpha gal food allergy |
| url | https://doi.org/10.1177/2374373518808310 |
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