Video-based patient education on carcinoid syndrome: Positive knowledge and behavior shift for patients.

Abstract

e15697 Background: Carcinoid syndrome (CS) negatively affects quality of life (QOL), compromising physical, daily, and emotional functioning. Reticence to discuss symptoms, particularly debilitating diarrhea, perpetuates negative QOL, as does confusion of CS symptoms with other conditions and dietary challenges. To address these needs, we created video-based patient education activities with the Carcinoid Cancer Foundation (CCF) to empower patients with information and resources on CS facts, diagnosis, medical management, eating well and self-care. Methods: Two 1-hour patient education activities were broadcast live online and on-demand in 2017 and 2018 at CancerCoachLive.com , carcinoid.org, and Facebook Live for 6+ months. Features included panel discussions, slides, live polling and Q&A, and video vignettes of real patient experiences. Knowledge-focused test questions were administered at 3 time points (pre-activity, immediate post-activity, and 8-week [follow-up] post). Behavioral and communication-focused questions were also asked at follow up. Data from these questions, live poll responses, and learner-submitted questions pre-event and during live Q&A were analyzed to determine engagement, lessons learned and continuing patient needs. Results: In total, 1,893 patients took part in the activities, and attracted 39,821 Facebook engagements (“views”). Respondents (n = 116-119) reported: 57%, improved communication with their healthcare providers (HCPs) regarding CS; 44%, improved feeling of being “in-control” of health care decision; 31%, improved care behaviors for their health. Improved communication with their HCPs were specific to: their disease and symptoms, treatments, and diet. Changes in behaviors included: dietary changes, more “involved” in care decisions, asking questions of HCPs, and proactively learning about CS. Knowledge improvements were observed on 7 of 8 questions on CS facts, diet, and treatment (5 of 7 statistically significant; average effect size = 1.16; n averaged 382 pre and 96 post). Conclusions: Patient education on CS can yield immediate and sustained gains in knowledge and behavior, which may improve diagnosis, treatment, and improve patient QOL.