Palliative care knowledge and access among people with small cell lung cancer and their family caregivers: Preliminary findings.

Abstract

197 Background: People with small cell lung cancer (SCLC) make up 13-15% of those diagnosed with lung cancer. Although current statistics show the 5-year survival rate of people with lung cancer has improved overall, this is not the case for those diagnosed with SCLC. The disease is rapidly growing and aggressive, making access to palliative care crucial for improving quality of life for both people with SCLC and their family members. We developed a survey to assess palliative care knowledge and access among people with small cell lung cancer and their family caregivers. Methods: An online cross-sectional survey was conducted by the Lung Cancer Registry from GO2 for Lung Cancer (lungcancerregistry.org) from June 2023-present and included questions regarding treatment decision making, palliative care, and access to care. The SCLC survey is promoted to current Lung Cancer Registry participants who indicated a diagnosis of SCLC or were a family caregiver of someone with SCLC. Both people with SCLC and their family caregivers are eligible to participate in the survey. We also recruited people with SCLC through additional targeted online recruitment, direct outreach to community hospitals, and healthcare providers. Descriptive statistics were used to summarize survey findings. Results: As of May 2024, the SCLC survey was completed by 20 participants (mean age, 62 years; White, 85.0%; female, 55.0%; diagnosed with SCLC, 95.0%). Over half of people with SCLC (n = 11, 55.0%) had a family caregiver. While most participants had heard of palliative care (n = 15, 75.0%), less than half (n = 9, 45.0%) were offered or given information about it. Half of participants (n = 10, 50.0%) received or indicated they would like to receive palliative care. When asked what was needed from palliative care amongst these individuals, medication management for pain and physical symptoms was the top response (26.9%). For those who did not receive or would not like to receive palliative care, the top reasons included that it was not offered to them (26.7%) and wanting to learn more about it first to guide their decision-making (20.0%). Lastly, when asked what type of palliative care support was needed, emotional support was the top response (27.3%) followed by information on coping with lung cancer (24.2%). Conclusions: Preliminary findings suggest efforts are needed by care teams to expand access and improve education regarding palliative care among people with SCLC and their family caregivers. The fast-growing, aggressive nature of SCLC makes it especially urgent that care teams reach and meet the needs of this population. Our findings thus far highlight the need for additional research with larger sample sizes to ensure generalizability for the small cell lung cancer community.