Evaluating the User-Perceived Benefit of a Virtual Lung Cancer Patient Education and Support Community: LVNG With Lung Cancer

Abstract

Background: The accessibility and quality of network support for people living with lung cancer (PLW) and their support partners (SP) can vary. Virtual platforms provide unique opportunities for PLW/SP peer support and disease education. Methods: Using a novel dual approach, we determined the user-perceived impact of the AstraZeneca-sponsored Facebook community, LVNG With Lung Cancer (facebook.com/LVNGWithLungCancerUS), and measured the social/behavioral impact on PLW/SP. Qualitative 1-hour phone interviews were conducted with community members aged ≥ 18 years. Additionally, inbound community comments (December 2015–October 2016) were retrospectively analyzed and categorized. Results: 18 PLW and 2 SP were interviewed. Mean years since diagnosis was 2.75 (range, 0.08–17). Of the total expressions of benefit (n = 513) made during the interviews, 32% focused on increased health knowledge; 28% on social impacts of the community (e.g., having a supportive environment); and 18% conveyed feelings of empowerment. Community membership led to behavioral change in many respondents: 55% asked their doctor more questions, and 50% gave advice to others. Inbound community comments (24,336 posts from 12,187 unique members) reflected the themes offered during interviews as important reasons to participate: 63% of posts asked for or shared cancer information; 98% provided emotional support/understanding; and 84% were inspirational/optimistic. Conclusions: This analysis of the real-world impact of a virtual community provided insight into the benefit that members derive. We hypothesize that once members’ emotional and educational needs were met, they were empowered and/or inspired to take positive actions leading to better health behaviors and increased quality of life—an outcome that may apply to other diseases.