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To Tell or Not to Tell
Primary Care Patients’ Disclosure Deliberations
Pamela Sankar, PhD;
Nora L. Jones, PhD
Arch Intern Med. 2005;165:2378-2383.
Background Literature on patient disclosure has highlighted policy proposals, practitioner attitude and practices, and issues specific to already identified vulnerable populations (eg, human immunodeficiency virus–positive patients and adolescents). We investigated the topics and concerns that led less-studied primary care patients to deliberate disclosure to their physician and the range of actions taken following such deliberation.
Methods This descriptive qualitative study used semistructured in-depth interviews with 85 self-selected female primary care patients recruited from 2 hospital-associated primary care practices and through advertisements in local newspapers.
Results Topics that led subjects to deliberate over disclosure included sex, sexually transmitted diseases, reproductive health, drug use, mental health, and domestic circumstances. Concerns prompting this deliberation fell into 2 categories. The first, extraindividual concerns, included fear of information circulating to employers or insurance companies and the need to disclose for adequate treatment. The second, intrapersonal concerns, centered on feelings of comfort, embarrassment, or shame in the act of disclosing during the clinical encounter. While the majority of women did eventually disclose all or part of the information in question, a significant minority did not disclose. There were no significant demographic differences associated with patterns of disclosure.
Conclusions Primary care patients have concerns that affect and sometimes limit disclosure. Physicians are encouraged to explore patients’ concerns about the uses and circulation of medical information, as well as anxiety over anticipated shame or embarrassment at the moment of information disclosure to physicians. This is especially important in primary care settings, where failure to disclose can mean lack of referral to needed specialized care.
Author Affiliations: Center for Bioethics, University of Pennsylvania, Philadelphia.
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