Background: The COVID-19 pandemic generated intense concern across the lung cancer (LC) community due to reports that LC patients are at higher risk for severe illness and/or death from COVID-19. Patient advocacy groups (PAGs) may need to revise their programs in order to address these concerns. To understand the specific needs of the LC community, LC PAGs conducted a survey to ask USA LC patients and caregivers to rank their concerns across a number of COVID-19-related topics.

Methods: A rapid needs assessment survey was created with input from LC patients and PAGs to cover three domains: General Information About COVID-19, What If I Get COVID-19, and COVID-19 Impact on Lung Cancer Care. The first two domains had 8 items while the third had 9 items. LC patients and caregivers in the USA were asked to rate their level of concern about each item on a 5-point Likert scale (where 1 = Not at all concerned to 5 = Extremely concerned). Data were collected for 5 days through an online platform during the first week of June. Weighted responses and percentages were calculated for each item using SPSS.

Results: Eighty-three participants responded to the survey; most were dealing with non-small cell LC, and 70% were stage IV. 1. General Information About COVID-19: Two top areas of concern were “How to know when it’s safe to return to normal activity” (80.5% very or extremely concerned), and “How to protect myself from COVID-19” (71% very or extremely concerned). On the other hand, participants were least concerned about “Origins of SARS-CoV-2” (only 25% very or extremely concerned) and “Stress/Anxiety affecting wellbeing” (only 25% very or extremely concerned). 2. What If I Get COVID-19: More than 80% of respondents were very or extremely concerned about “Vaccines/Treatments for COVID-19” and “Learning about risk factors that make LC patients vulnerable to COVID-19.” Interestingly, “Preparation of legal documents in anticipation of COVID-19” was not a top concern for participants (only 23% were very or extremely concerned). 3. COVID-19 Impact on Lung Cancer Care: Participants were very or extremely concerned that “The pandemic would delay or terminate LC research” (77%) and “Be refused treatment due to limit resources” (66%). 4. Lastly, we evaluated patient concerns by age. Respondents were stratified into two groups: 60 and younger or 61 and older. Those 60 and younger were more concerned about their “cancer center being a COVID-19 hotspot” and the “delay or termination in LC research” whereas those 61 and older were more concerned that they “would not be able to contact their health care provider.”

Conclusions: By collaborating with patients to identify and rank specific concerns of the LC community, patient advocacy groups can be better positioned to prioritize those programs and services that will help patients and caregivers navigate the ongoing challenges of the COVID-19 pandemic.

Citation Format: Janet Freeman-Daily, Upal Basu Roy, Kim Norris, Becky Bunn, Jan Baranski, Cristina Chin, Amy C. Moore. Patient concerns during the COVID-19 pandemic: Lessons from the lung cancer community [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr PO-074.