Participant Characteristics

During the study period of 73 months, the You and Lung Cancer website (Fig. 1) for English speakers and YouTube channel had 794,203 total views (You and Lung Cancer website = 133,999; YouTube = 660,204). Overall, the educational content was accessed by 467,546 unique visitors from 164 countries. About half of the unique visitors to the website were from the United States (51%), while 49% of unique visitors were from other countries, namely China (8%), Canada (5%), India (4%), the UK (3%), and other countries (29%). The content areas covered in the lung cancer educational program were broad in scope and are summarized in Fig. 2.

Of the 1443 respondents who completed the demographic survey questions, approximately 46% of participant responses identified as lung cancer patients, of which 38% were undergoing treatment and 8% were lung cancer survivors; the remainder were family or caregivers (21%), healthcare providers (14%), and “other” (undefined) (19%) (Table 1). A selected sample list of comments received from patients, family members, caregivers, visitors, and healthcare providers in Table 5 provides verbatim insights into specific areas of importance among the user audience. Some of the patient responses reflected a diversity of interest: comments were received on personal use of immunotherapy, familial predisposition to lung cancer, symptoms related to lung cancer progression, survivorship and unproductive cough, and issues of back pain. Family members commented on outcomes and immunotherapy treatment and concerns about family members who smoke. Healthcare providers commented on the ease of understanding the educational content, intent to share resources with their patients, interest in further resources for patient communities, and requests for resources enabling community dissemination. Unknown comments addressed issues such as back pain; concerns about late-stage detection of small cell lung cancer; and the benefits of access to education materials that provide clear, comprehensive, and informative lung cancer resources.

Table 1 Online survey respondent demographics from the “You and Lung Cancer” programComparison of Animations, Expert Videos, and Patient Videos

Table 2 lists the most popular topics for the animations. “Understanding Non-Small Cell Lung Cancer” (180,591 views), “Staging of Lung Cancer” (144,238 views), “Treatment and Management of Small Cell Lung Cancer” (49,244 views), “Treatment and Management of Non-Small Cell Lung Cancer” (43,788 views), and “Immunotherapy Treatments for Non-Small Cell Lung Cancer” (42,208 views) were the top animations viewed, respectively.

Table 2 Top 5 animations and top 10 expert videos by popularity from the “You and Lung Cancer” program

The most popular expert videos viewed by the participants were “What does it mean if a patient has ‘metastatic lung cancer’?” (13,475 views), “When would a patient with lung cancer consider ‘Palliative Care’?” (10,823 views), “What is a lung biopsy?” (9947 views), “What is an EGFR mutation for lung cancer?” (6867 views), and “How does low-dose CT show whether I have lung cancer?” (5690 views) (Table 2).

Viewer Retention for Animations, Expert Videos, and Patient Videos

Table 3 lists the top ten animations and top ten expert videos by viewer retention (as determined by the percentage of the total video duration). On average, 61.25% ± 2.07% (95% CI) of all video content was viewed. Table 4 provides a comparative analysis of all media types (animation videos, expert videos, patient videos) and shows that animation videos have a significantly higher mean number of unique views per day, compared to the expert videos and the patient videos. Although the animations outperformed the expert videos and patient videos in terms of the number of unique viewers, the viewer retention for patient story videos was higher than that for expert videos and animation videos (Table 4). Patient videos had the lowest number of views, but the highest rates of viewer retention with 64.06% ± 4.64% (95% CI) of a patient video watched, compared to 62.74% ± 2.21 (95% CI) for the expert videos and 45.19% ± 3.94 (95% CI) for the animation videos. Table 5 provides a range of feedback via direct comments on the program submitted via the website. Much of the feedback was positive in nature. While we do not have a mechanism to respond to questions directly to patients, the questions received are being tracked and used to incorporate into future modules.

Table 3 Top 10 animations, top 10 expert videos, and top 10 patient videos by highest retention determined by the percentage of the total video length viewed from the ‘You and Lung Cancer’ programTable 4 Comparison of the number of unique views per day for animation videos, expert videos, and patient videos from the “You and Lung Cancer” programTable 5 Sample of comments received from patients, caregivers, and visitors from the “You and Lung Cancer” website comment sectionParticipant Knowledge Change and Commitment to Change

We report on patients who experienced improved outcomes in the You and Lung Cancer program based on their voluntary feedback. Of the 223 participants who completed the online survey on knowledge improvement, approximately 95% reported that they learned new general information about lung cancer, 94% learned new diagnosis and staging information, and 93% learned new management and treatment options (Fig. 3). Most participants expressed a commitment to change, such as using the information to better manage their lung cancer (98%) and their intention to engage with their doctor in discussions about lung cancer (94%) (Fig. 3). Participants also indicated their extent of knowledge of lung cancer before using the website (pre-website) and after using the website (post-website) (Fig. 4): 12% reported high knowledge pre-website, whereas 74% reported high knowledge post-website. Conversely, 47% reported low knowledge levels pre-website, and only 3% reported low knowledge levels about lung cancer post-website (Fig. 4). A test of marginal homogeneity revealed that the increase in self-reported knowledge from pre- to post-website is statistically significant (χ2(2, N = 223) = 268, p < 0.001), with 73% of the sample reporting higher knowledge after using the program website than before.

Fig. 3

Patients who experienced improved outcomes in the “You and Lung Cancer” program

Fig. 4

Patients who reported changes in levels of knowledge before using the website and after using the website in the “You and Lung Cancer” program