ABSTRACT
Background: The COVID-19 pandemic generated intense concern across the lung cancer (LC) community due toreports 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 ofthe LC community, LC PAGs conducted a survey to ask USA LC patients and caregivers to rank their concernsacross a number of COVID-19-related topics. Methods: A rapid needs assessment survey was created with input from LC patients and PAGs to cover threedomains: General Information About COVID-19, What If I Get COVID-19, and COVID-19 Impact on Lung CancerCare. The first two domains had 8 items while the third had 9 items. LC patients and caregivers in the USA wereasked 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 safeto 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 extremelyconcerned). 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 forparticipants (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 “Berefused treatment due to limit resources” (66%). 4. Lastly, we evaluated patient concerns by age. Respondents werestratified 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 andolder 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, patientadvocacy groups can be better positioned to prioritize those programs and services that will help patients andcaregivers navigate the ongoing challenges of the COVID-19 pandemic.
ABSTRACT
Background: The COVID-19 pandemic has presented an urgent and serious threat to multiple at-risk populations, including those with lung cancer (LC). This rapidly evolving crisis has seen a growing onslaught of information andguidance from multiple sources, much of which is confusing and conflicting. Thus, LC patient advocacy groups(PAGs) in the USA collaborated to share carefully vetted COVID-19 information for LC patients and caregiversonline. Our goals were to gather evidence-based information that addressed concerns of LC patients andcaregivers, translate it in a manner understandable for the general public, and share it with one voice across all LCnonprofits. This retrospective study examined whether the online LC community found this collaboration valuableand whether the weekly updates addressed useful topics in a trustworthy manner. Methods: The first “Joint Statement on Coronavirus COVID-19 from Lung Cancer Advocacy Groups” was publishedon March 3, 2020. Updates were published most Mondays thereafter. We also produced an IASLC podcast. Anonline survey (conducted over a 5-day period in early June) asked USA LC patients and caregivers (1) if they wereaware of the updates, (2) whether they found the updates useful, (3) which topic areas they found most helpful, and(4) what value they saw in the collaboration across LC advocacy groups. We also collected web statistics for eachPAGs posts of this content. Results: Cumulatively, online posts of the weekly updates received over 34,000 views between March 3 and theend of May and reached over 71,000 on Facebook. The podcast received twice the number of listens compared tothe average of pre-COVID-19 podcasts on the IASLC and Soundcloud sites. Of the 83 LC patients and caregiverswho responded to the online survey, three quarters were dealing with stage III or IV non-small cell LC, and half wereolder than 60. About 2/3 were aware of the weekly updates, and of those, over 80% found the statements helpful.The five most helpful topics were (1) effect of the pandemic on LC diagnosis, treatment, and clinical trials;(2) effectof the pandemic on LC research;(3) COVID-19 treatments and vaccines;(4) who is likely to have a severe case ofCOVID-19;and (5) what we know about developing immunity to COVID-19. Based on coding responses from anopen-ended question, the majority of respondents found the collaboration valuable and trustworthy (for example,Increased trust and credibility knowing all orgs are behind it). The updates were found so valuable that they arealso translated into Spanish by a pan-cancer Latin American PAG for their communities. Conclusions: Lung cancer patients and caregivers, particularly those considered to be at higher risk for severesymptoms or death from COVID-19, found evidence-based, patient-focused collaborative updates about COVID-19from major lung cancer PAGs informative, helpful, and trustworthy.