Scope, Themes, and Medical Accuracy of eHealth Peripheral Artery Disease Community Forums

Abstract

Background: The availability of electronic health (eHealth) information and disease-related community forums has grown over the last decade. Although patients and families frequently use these resources, their content has not been characterized in terms users, content, or reliability of information. eHealth communities therefore represent a potentially valuable but uncharted source of information about key patient issues, communication terminology, and unmet needs. We hypothesized that eHealth forums would contain terminology, themes, and advice inconsistent with resources from medical providers and references. To test this hypothesis, we performed a qualitative analysis of posts and responses from an open-access peripheral artery disease (PAD) eHealth community forum to characterize the discussion, participants, and the information being exchanged.

Methods: Posts were collected from an online PAD Medical Support Community forum (MedHelp), which is open access, does not require participants to identify themselves, and is based in the United States. Posts were selected from threads in which the main topic was PAD, including diagnosis, symptoms, and treatment. Original posts and related responses were analyzed for thematic content, common vernacular, and self-reported characteristics of the participants using a qualitative analysis software program. Disease-specific comments and advice were evaluated for congruence with contemporary PAD treatment guidelines.

Results: A total of 103 posts were collected and analyzed, including 40 original posts and 63 responses. Forty-five percent of the original posts and 19% of the responses were authored by participants who self-identified as patients with PAD. The remaining posts were authored by people with undeclared relationships to patients with PAD, followed by children, spouses, and other relatives. The most common themes among original posts included PAD diagnosis (and differential) (25%), treatment (23%), epidemiology and pathophysiology (21%), disease symptoms and impacts on activities of daily living (15%), and health-care provider recommendations (13%). Themes of responses included medical advice (40.5%), personal experiences with PAD (32.8%), and social support (12.6%). Negative attitudes were identified in 10 of 18 (55.6%) posts related to experiences with health-care providers. Of all medical advice, 15.1% was inconsistent with clinical treatment guidelines.

Conclusion: eHealth communities are a rich source of information related to the experiences of patients with PAD, their treatment preferences, questions they consider important, and terminology that they use. This information can be used to understand unmet patient needs, develop educational resources, and improve communication.