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

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, (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 ( = 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.