What do cervical cancer patients know, how do they learn, and who do they tell? A pilot study

Abstract

Background: This study explored what patients identified with cervical cancer know about the link between human papillomavirus (HPV) and cervical cancer and where they learned this information. Patients share a great deal of information with family, friends and colleagues and we were interested in the accuracy and sources of information they are sharing. Methods: Patients identified through the EHR of a health system who had a history of cervical cancer were invited to participate in a brief survey of their experience. The sample represents an opportunity sample of patients who responded. Results: Generally, these patients, drawn from the Geisinger Health System in central Pennsylvania, were older (mean 57.5 years), White, and about half had annual household income of $35 K. Among all respondents about 17% had not heard of HPV, 21% did not know about an HPV vaccine, and about 38% did not know about the link between HPV and cervical cancer. Most frequently patients reported obtaining their information about HPV from television advertisements. About half received information from their oncologist. Patients reported having conversations with families about their own cancer, the cause of their cancer and HPV vaccination. It is important to note that these conversations were supported by information from many sources. Conclusions: Patients may serve as a conduit for information about their condition and may be informal ‘educators’ in the community. It is important to make certain that these opportunities are informed by information obtained from trusted and accurate sources.