Methods: We conducted an online survey between December 4-19, 2014 of CLL patients who were asked to complete the survey either at the CLL group on ACOR (http://www.acor.org), the CLLSLL group on Yahoo (https://groups.yahoo.com/neo/groups/CLLSLL/info_) or at http://bkoffman.blogspot.com. The survey included 25 multi-part questions assessing demographics, treatment status, self-assessed knowledge of CLL, sources of information, and feedback about currently available web-based information. Respondents were also asked about the websites they use most often and what they would wish for in a new CLL website.

Results: 975 CLL patients and/or caregivers viewed and started the survey and 419 complete responses were received:

• Average age – 62 (range 30-99)
• 57% Male, 43% Female
• Average number of years since diagnosis – 7 (range, 0.1-25 years)
• 81% diagnosed greater than 2 years ago
• 59% have had a least one type of treatment regimen. [Figure 1]
• Sub-analyses were performed examining differences between respondents. Differences between these groups will be reported if they varied from the aggregated data.
  • Diagnosed 2 or fewer years ago versus greater than 2 years ago (19% vs 81%)
  • Patients who have received at least one treatment regimen versus “Watch and Wait” (41% vs 59%).

Figure 1. Treatment Status

Almost one-third of respondents have participated in a clinical trial with 91% of non-participants reporting that they would consider future participation. Respondents who were diagnosed 2 or fewer years ago, or reporting a “Watch and Wait’ treatment status reported lower participation, but high levels of future consideration. [Figure 2a and 2b]

Figure 2a. Currently Participating in a Clinical Trial

Figure 2b. Would Consider Participating in a Clinical Trial

Respondents were asked to rate their level of knowledge about CLL on a scale of 1 to 5 with 1 representing “Very little knowledge” and 5 representing “Expert from a patient perspective”. Percentages of combined 4 or 5 ratings revealed that approximately two-thirds of respondents who were diagnosed more than 2 years ago, or having received treatment perceived themselves as very knowledgeable, as compared to about half of those who were diagnosed two or fewer years ago, or those who were not undergoing treatment. [Figure 3]

Figure 3. Self-assessed Knowledge of CLL (% of ratings 4 or 5)

Respondents were asked to indicate their main sources of information about CLL and then to rank those selected in order of importance with 1 indicating the most important source. The main sources of information were similar among subgroups. [Figure 4] Ranking of top 5 sources of information was also consistent among subgroups. [Figure 5]

Figure 4. Main Sources of Information about CLL (% of ALL respondents)

Figure 5. Percentage of Respondents Ranking Information Source Among Top 3 Used

When asked to rate the credibility of various web-based information sources, percentages of combined 4 & 5 ratings indicated that Leukemia and Lymphoma health sites and independent blogs with balanced clinical content and commentary on CLL were felt to be the most credible web-based information sites. [Figure 6]

Figure 6. Perceived Credibility of Web-based Information Sources
(% of ratings 4 or 5)

Top reasons for searching online for information on CLL (responses were similar among subgroups:

• To stay updated on the latest general news and research on CLL – 91%
• To become better educated about CLL – 90%
• To learn about new treatment options for CLL for myself – 89%
• To learn from experts speaking on CLL – 89%

After finding good information online, respondents most often reported that they felt:

• More confident in discussing treatment options with their doctor and sharing in the medical decisions (83% to 91%)
• More in control (76% to 80%)
• More likely to consider new or different treatment options (54% to 74%)
• More likely to consider participating in a clinical trial (50% to 56%).

When asked to identify what qualities were lacking in current CLL online offerings, respondents most often mentioned information that was sufficiently comprehensive and detailed (51% to 55%), information that was up to date (49% to 54%) and information that is easily searched (42% to 52%).

Survey respondents were asked to list the websites that they typically use. Ninety-two percent were able to list at least one website. The most frequent ones mentioned are listed in Table 1.

Table 1. Websites most frequently mentioned

There is a high level of interest in the proposed topics listed for the CLL Society website. Respondents were asked to indicate their level of interest on a scale from 1 to 5, with 1 indicating no interest and 5 indicating extremely interested. Interest levels were similar across all subgroups with the exception of 2 content areas. Regarding the fundamental information such as CLL 101 and a Glossary of CLL Terms, respondents who had been diagnosed 2 or fewer years ago, or reported a Watch and Wait status reported higher interest than respondents who had received treatment or were diagnosed greater than 2 years ago. [Figure 7]

Figure 7. Website Wish List
(% of ratings 4 or 5)

Table 2. Other Information Requested to be Included in CLL Society Website
(n=206, percentages will add to >100% due to multiple answers)