Abstract
Background: As the voice of the National Cancer Institute, the Cancer Information Service (CIS) maintains the mission of communicating evidence‐based cancer information to the public, including cancer patients, family members, friends, and health care professionals. While the CIS is predominantly a telephone‐based service, the new LiveHelp format offers online information seekers the opportunity to use an instant messaging platform to ask questions and seek assistance from highly trained cancer information specialists (IS). Although LiveHelp has been in operation since 2003, no data exists regarding this novel and expanding method of conveying cancer information and communicating with cancer information consumers. The study aims were: (1) to characterize the purpose of the contact, discussion topics, and resources utilized in LiveHelp sessions focused on lung cancer and (2) to provide descriptive demographic information regarding lung cancer information seekers.
Methods: Information captured in the Electronic Contact Record Form (ECRF) associated with each LiveHelp session was used to address study aims. The ECRF contains data coded by ISs during or following each contact. A pre‐existing coding scheme is used by ISs to report the purpose of the session and subsequent actions taken. Additionally, approximately 25% of respondents are asked to complete a demographic survey following the LiveHelp session. Data from all lung cancer‐related LiveHelp sessions conducted in 2008 were analyzed.
Results: Of the 20,939 LiveHelp sessions in 2008, lung cancer was the second most common malignancy addressed (n=1,179, 5.6%). Most users were relatives or friends of cancer patients (66%) and relatively few were cancer patients (13%). The contact purpose was generally motivated by a concern about a family member or friend with cancer (47%), but contacts also sought to understand medical information (25%) or address questions about personal health concerns (10%). The primary subject of the contact was most commonly lung cancer‐specific information (e.g., staging, prognosis [42%]), but also frequently addressed treatment or side effect management issues (16%). ISs primarily referred contacts to the NCI's cancer.gov portal (79%). Secondary referrals included recommending review of CIS fact sheets (40%) and consulting with a health care provider (28%). With regard to available demographic information (n=159), users were predominantly female (81%), Caucasian (87%), had a bachelor's degree or higher (55%), had private health insurance (60%), and were an average age of 43 years (±14). Surprisingly, 30% reported having no access to healthcare. The vast majority of users initially located LiveHelp via the Internet (80%) and were first‐time CIS users (89%).
Conclusions: Given its prevalence and impact, it is not surprising that lung cancer is the most common non‐sex‐specific malignancy for which individuals contact LiveHelp. Interestingly, the vast majority of these contacts are generated by family or friends of individuals diagnosed with lung cancer. Although descriptive data regarding the users and content of LiveHelp provides basic information about its educational and support functions, analyzing the information exchange embedded in the content of the session transcripts would provide an even greater understanding of how to optimize cancer communication efforts via LiveHelp.
Citation Information: Cancer Prev Res 2010;3(1 Suppl):B1.
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