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

November 2021 Vol 12, No 11
Beth Sandy
Abramson Cancer Center
University of Pennsylvania
Philadelphia, PA
Mona L. Martin
Seattle, WA
Kristin Bucklen
Wilmington, DE;
Lise Hall
Gaithersburg, MD
Dann Wonser
Ambassador and Advisor
LVNG With Lung Cancer
Portland, OR
Genevieve de Renne
Ambassador and Advisor
LVNG With Lung Cancer
Portland, OR

Background: Thanks to recent treatment advances, people living with lung cancer (PLW) are living longer and are a relatively new class of cancer survivors. A lung cancer diagnosis engenders emotional and educational challenges for both PLW and their support partners (SP) that can impact health outcomes and quality of life (QOL). LVNG With Lung Cancer (www.facebook.com/LVNGWithLungCancerUS) is a Facebook community managed and moderated by AstraZeneca to provide support, education, inspiration, and opportunities for peer-to-peer connection for PLW/SP. Since August 2015, the LVNG With Lung Cancer US community has grown to more than 220,000 members.

Objectives: To determine user-perceived benefits of participating in the LVNG With Lung Cancer community and measure the social/behavioral impact on PLW/SP.

Methods: A complimentary evaluation, using both qualitative interviews and quantitative content analysis of inbound community comments, was implemented. One-hour phone interviews were conducted with LVNG With Lung Cancer members (PLW or SP) aged ≥18 years who responded to invitations to participate in the study and satisfied eligibility criteria. Interview transcripts were analyzed, and expressions of benefit (EB) were identified and categorized. Additionally, a retrospective analysis was conducted on inbound community comments (December 2015-October 2016); 24,336 posts from 12,187 unique members were analyzed thematically and categorized. Thematic content from both approaches was compared and used to contextualize and characterize the member experience.

Results: From 20 qualitative interviews (18 PLW/2 SP), 513 EBs were identified. Thirty-two percent focused on increased health knowledge; participants cited cancer information, good health behaviors, and coping strategies as key community benefits. Twenty-eight percent of EBs related to having a forum to share experiences, and a supportive community environment was most frequently cited. Eighteen percent of EBs conveyed the community gives members feelings of empowerment, including feeling less alone (55% of category respondents) and feeling inspired to help others (40% of category respondents). Benefits received from community membership led to behavioral change in many respondents: 55% asked their doctor more questions, 50% shared helpful experiences, and 35% took a more active role in their healthcare. Notably, one SP member said the community provided her with the knowledge she needed to address her symptoms and fears with her doctor, who was hesitant to biopsy because she did not meet typical risk criteria. Her self-advocacy was successful and ultimately led to an early lung cancer diagnosis. The retrospective posts analysis 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 dual analysis of the real-world impact of a virtual Facebook community provided insight into the benefit that members derive. Further, they characterize a patient journey. Members initially joined due to a strong sense of isolation and need to connect with others with similar experiences. Once their emotional and educational needs were addressed, they were empowered and/or inspired to take positive actions leading to better health behaviors and increased QOL, to share their own experiences, and to become active in supporting others. This outcome may have wider applicability for diseases beyond lung cancer.

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Last modified: August 10, 2023

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