Abstract
ObjectivesAs there is a dearth of information about anal cancer available at cancer centers, patients often use the Internet to search for information. This is problematic, however, because the quality of information on the Internet is variable, and the health literacy demanded is higher than the average patrons’ capacity. The purposes of this study were to (1) determine the most common websites with anal cancer consumer health information, (2) identify the supportive care needs that each website addresses, and (3) evaluate the websites’ quality and health literacy demand.MethodsMedical Subject Headings (MeSH) entry terms for “Anus Neoplasms” were used in Google Canada to identify websites. Seven domains of supportive care needs were defined using Fitch’s Supportive Care Framework for Cancer Care. Website quality was evaluated using the DISCERN tool. Health literacy demand was assessed using readability calculators, where best practice dictates a grade 6 or lower, and the Patient Education Material Assessment Tool (PEMAT) that computes a percentage score in 2 domains, understandability and actionability, with 80% being an acceptable score.ResultsEighteen unique websites were evaluated. One website met health literacy best practices and had a “good” quality rating. Most websites addressed only 1 supportive care domain (61%), were of “fair” quality (67%), had readability scores higher than grade 6 (89%), and had PEMAT scores ranging from 41%–92% for understandability and 0–70% for actionability.ConclusionThe information gaps on anal cancer websites warrant a need for more health literate anal cancer health information on the Internet.
Highlights
Anal cancer is a relatively uncommon cancer, but its global incidence is rising [1, 2]
The most recent statistics reported by the Canadian Cancer Society in 2013 state that approximately 580 Canadians are diagnosed with the disease each year, of whom 144 die as a result [3]
“anal neoplasm” and “anus neoplasm” are terms typically used by health care practitioners, they were included to account for patients, families, or caregivers who might use these search terms if they had heard or seen the terms in health-related reports
Summary
Anal cancer is a relatively uncommon cancer, but its global incidence is rising [1, 2]. The American Cancer Society estimates that there will be 8,300 new cases of anal cancer in the United States in 2019, with 1,280 people dying from the disease [4]. Despite the efforts that consumer health librarians make to develop and maintain hospital library collections that are high quality for the diverse patient populations they serve, gaps exist in collections on rare diseases. In the instance of anal cancer, print patient information and educational resources are scarce at cancer centres in Canada. Specialty societies do not actively develop and disseminate anal cancer–specific print materials but Journal of the Medical Library Association do provide some information online [11]. As a result, when patrons seek information about anal cancer, consumer health librarians and library volunteers search the Internet to find information on an ad hoc basis
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