2023 World Conference on Lung Cancer (Posters)-EP16.01. Virtual Educational Patient Meetings Empower, Unite Small Cell Lung Cancer Patients

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This document highlights the importance of patient advocacy for small cell lung cancer (SCLC) patients. SCLC, which accounts for approximately 15% of lung cancer diagnoses, is characterized by its aggressive nature and limited treatment options compared to non-small cell lung cancer (NSCLC). Due to these factors, SCLC patients often feel left out and experience higher levels of distress and unmet psychosocial needs. The study focuses on the role of virtual educational patient meetings in empowering and uniting SCLC patients. <br /><br />The study outlines two phases of the research. In phase I, efforts were made to raise awareness and establish relationships with SCLC patients and caregivers. This involved recruiting patient advocates, contacting SCLC experts as speakers, and promoting meeting information on social media and the LiveLung website. Information was also shared with cancer centers and medical communities through meeting postcards. In phase II, monthly virtual SCLC group meetings were held, featuring expert speakers. Participants received newsletters and post-meeting emails with links to meeting videos on the LiveLung YouTube channel. Additionally, targeted opportunities were offered to patients and caregivers to serve on patient advisory boards and focus groups.<br /><br />The results show that since the launch of the program, meeting registrations have nearly doubled. The study also hosted a SCLC Summit and focus groups to further engage the SCLC population. The findings reveal that educational and psychosocial support were significant unmet needs for SCLC patients and caregivers. The program successfully built a community that had been underserved for decades, providing education, engagement, and empowerment. This helps SCLC patients and their caregivers make informed decisions about treatment options and become powerful self-advocates.<br /><br />In conclusion, this study highlights the importance of patient advocacy in addressing the unique needs of SCLC patients. By providing virtual educational meetings and building a supportive community, the program aims to empower and unite SCLC patients in their journey of battling the disease.

Asset Subtitle

Dusty Donaldson

Meta Tag

Speaker Dusty Donaldson

Topic Patient Advocacy

Keywords

patient advocacy

small cell lung cancer

SCLC

aggressive nature

limited treatment options

psychosocial needs

virtual educational patient meetings

awareness raising

empowerment

treatment options