OBJECTIVES: To understand the value of the virtual community (VC) in a prospective. multicenter study.
METHODS: As part of the MADELINE study, US patients with HR+/HER2- advanced/metastatic (ABC/MBC) breast cancer initiating palbociclib had access to a study-specific VC. Patients within the VC were assigned points based on actions completed - 3 points per video view and discussion topic added, 2 points per comment and direct message, 1.5 points per “like” on a discussion or comment, 1 point per VC visit, and 0.5 points per page view. Patients were classified as high (≥70 points), medium (40-<70 points) or low (0-<40 points) engagers. Patients completed an end of study survey (EOS) where they selected the most beneficial VC aspects. Patients completed the SF-12 and CES-D-10 surveys at each treatment cycle. An interim analysis was conducted as of May 1, 2019.
RESULTS: This analysis included 137 patients (mean [± standard deviation] age 59.7 ± 11.7; white: 83%) of which 30%, 13%, and 57% were high, medium, and low engagers, respectively. Mean (minimum, maximum) community visits and page views were 83 (17,200) and 169 (39,502) for high, 20 (9,31) and 52 (27,88) for medium, and 9 (1,24) and 16 (1,41) for low engagers. High engagers accounted for 88% of discussion topics added (15/17), 81% (96/119) of videos viewed in the VC, 80% of direct messages (4/5), and 78% (36/46) of comments. Eighty-three percent (35/42) of EOS respondents selected “Access to palbociclib and MBC information” as the most beneficial VC component. SF-12 and CES-D scores remained relatively stable across cycles and within engagement groups.
CONCLUSIONS: The most frequent actions in the VC across all engagement groups were viewing information pages and patient videos while the least frequent were posting discussion topics and sending direct messages. Patients found access to palbociclib and MBC information beneficial.
