Women's Information Needs and Educational Preferences Regarding Lung Cancer Screening

Abstract

Background:

Physicians are less likely to discuss lung cancer screening (LCS) with women, and women have lower awareness of LCS availability. The objective of this qualitative study was to determine information needs, patient–provider communication barriers, and preferences for LCS education among women.

Materials and Methods:

Eight semistructured qualitative focus groups were conducted with 28 self-identified women meeting LCS eligibility criteria. Participants were recruited through a large health system, from a community-based LCS program, and through a national online database between October 2020 and March 2021. Focus groups were led by a trained moderator via Zoom. Audio recordings were transcribed and analyzed using thematic analysis by investigators.

Results:

LCS decision-making influences included: (1) Health care provider recommendation; (2) Self-advocacy; (3) Insurance coverage and cost; (4) Family; and (5) Interest in early detection. Participants preferred video and print materials, available at physician's office or shared by physician, without scare tactics or shaming about smoking, use clear language, with diverse participants and images. Preferred content focused on: (1) Benefits of early detection; (2) Lung cancer definition, statistics, and risk factors; (3) Benefits of quitting smoking; (4) Demonstration or explanation of how LCS is done; and (5) Availability of other tests and potential harms of screening.

Conclusion:

Women in our study had limited awareness of LCS and their eligibility and wanted recommendation and support for LCS from their health care providers. We identified addressable information needs about lung cancer and the screening process that can be used to improve LCS uptake in women and shared decision-making processes.

Introduction

Lung cancer is the leading cause of cancer death in U.S. males and females with an estimated 130,180 deaths in 2022.¹ Among women, where uptake of smoking began later, lung cancer incidence rates have only recently begun to decline.² Incidence rates have declined more rapidly among men, beginning in the 1980's.³ There is some evidence of age and birth cohort effects, with lung cancer incidence in females surpassing that of males in younger age groups.⁴ In 2011 the National Lung Screening Trial demonstrated a 26% reduction in mortality associated with annual screening via low-dose computed tomography (LDCT).⁵ Results from the Nederlands–Leuvens Longkanker Screenings Onderzoek (NELSON) trial suggest that the benefits of lung cancer screening (LCS) are potentially greater among women compared to men.⁶ However, LCS uptake has been slow.⁷ According to estimates from the National Health Interview Survey, 18.4% of respondents aged 50–80 years that had ever smoked met United States Preventive Services Task Force (USPSTF) LCS eligibility criteria in 2015,⁸ but other data show that just 5.8% of eligible individuals have received LCS,⁹ with particularly low screening rates among women.¹⁰

Multiple barriers to screening have been identified, including lack of awareness of screening, cost concerns and insurance coverage, fear, risk perception and perceived lack of benefit, and lack of access.¹¹ Less knowledge about lung cancer's consequences, fatalistic beliefs, and lack of self-efficacy to discuss LDCT with a health care provider are associated with lower intentions to screen individuals that smoke.¹² A qualitative study of residents of upstate New York identified three major themes from screening eligible current and former smokers, including concerns about screening cost, a need for more information about the test and apprehension about results, and a desire to talk to a physician.¹³ However, these previous studies have not specifically focused on women. Our work demonstrates that physicians are less likely to discuss LCS with women than men, even among age-eligible women that currently smoke, and that women had lower knowledge and awareness of LCS compared to men.¹⁴ The purpose of this qualitative study was to better understand the experiences and beliefs of LCS eligible women, including interactions with health care providers, and to determine their information needs and preferences for lung cancer health education.

Materials and Methods

This qualitative study assessed screening awareness, intentions, and utilization. We used focus groups to determine educational needs, patient–provider communication barriers, and preferences for methods of lung cancer health education among women. Data collection occurred from October 2020 to March 2021. Review and approval for this study and all procedures were obtained from Dana-Farber Cancer Institute Institutional Review Board (Protocol No. 19-591).

Eligibility criteria

Individuals were eligible for this study if they self-identified as female and met USPSTF LCS criteria. We used the 2013 guidelines¹⁵ initially and updated when draft 2020 guidelines were released. We attempted to contact anyone previously screened who was not eligible under 2013 USPSTF criteria but who would be eligible under 2020 guidelines. Participants were eligible if they were age 50–80 (55–80 under 2013 criteria), currently or formerly smoked, and at least a 20 pack-year smoking history (30 pack-years under 2013 criteria). Those that formerly smoked must have quit smoking within the last 15 years. Individuals were excluded if they had a personal history of lung cancer or if they were undergoing active treatment for cancer.

Participant recruitment and enrollment

Participants were recruited in three primary ways, either locally from within Mass General Brigham or through ResearchMatch, a national health volunteer registry that was created by several academic institutions and supported by the U.S. National Institutes of Health as part of the Clinical Translational Science Award (CTSA) program,¹⁶ and through social media advertisements. Potentially eligible Mass General Brigham patients were identified through electronic medical record review, emails through the electronic patient portal, and advertisements on an internal research website. We also invited individuals who had previously been referred to LCS through the Cancer Care Equity Program at Dana-Farber Cancer Institute.¹⁷ On ResearchMatch we sent study invitations to age-eligible females who had ever smoked (smoking duration or pack-years were not available screening criteria). Study flyers were also posted on the research laboratory's social media websites, including Facebook and Twitter. Interested participants contacted the study team, who verified eligibility, provided the study survey, and scheduled their focus group. Participants received a $50 Amazon or Visa gift card via mail or email for their participation at the conclusion of study activities. We screened 77 individuals for eligibility. Forty-five were ineligible for the following reasons: never smoked (n = 4), <50 years of age (n = 2), <20 pack-years smoking history (n = 22), or quit smoking >15 years ago (n = 17). Of 32 eligible individuals, 32 consented to participate in the study and 28 attended a focus group.

Focus groups

We conducted eight 60–90-minute focus groups with two to five participants each via Zoom. All participants agreed to audio-recording, which was later professionally transcribed. Focus groups were facilitated by a trained moderator (A.R.) using a semistructured focus group guide (Table 1), with one research assistant taking notes. Focus groups were designed to: (1) Elicit participants' knowledge, attitudes, and beliefs about lung cancer and their risk perceptions; (2) Determine knowledge and LCS awareness; (3) Determine experiences with and preferences for patient–provider communication and screening decision-making; (4) Examine existing LCS educational materials and garner feedback on appropriateness, acceptability, and preferences.

Table 1.

Sample Items from the Semistructured Focus Group Guide

• What are some reasons that a person might decide to get screened for lung cancer?
• What do you believe are the benefits, if any, of lung cancer screening? What are the harms, if any?

• What types of things might prevent a person from getting screened for lung cancer? Probe: What about lack of knowledge? Financial? Health insurance? Fear? The test itself? Stigma?

• What factors would play a role in your decision about whether or not to get screened?
• What (or who) would play the biggest role in your decision to get screened?
• What is the most important factor that would keep you from getting screened?

• What is the most important factor that would make you want to get screened?

• What role, if any, would a recommendation from your doctor/health care provider play in your decision about screening?
• Would a recommendation from your doctor or other health care provider make you more likely to be screened? Who else may have an influence on your decision about getting screened for lung cancer (your family, pastor, etc.)?

• If you wanted to get more information about getting tested for lung cancer where would you go?

• What information would you need to make a decision about lung cancer screening?

• What type of information, if any, might motivate you to ask your doctor/health care provider about a lung cancer screening test?
• What things might discourage you or prevent you from asking your doctor about a lung cancer screening test?
• What information would help you ask your doctor or other health care provider for lung cancer screening test?

During the review of existing educational materials, the moderator presented a brochure (either from a one-page infographic from the Centers for Disease Control and Prevention¹⁸ or a one-page brochure from the Lung Cancer Project¹⁹) and a video clip (either 4-minute clip from Brigham and Women's Hospital²⁰ or a 2-minute clip from University of Chicago Medicine²¹) and elicited impressions about the content, style, and tone or approach. These materials were selected from the top 50 hits of a Google search for “lung cancer screening” and “lung cancer screening education materials.” They were selected to provide differing styles of information presentation with the two written materials contrasting graphic versus text heavy approaches and the videos comparing an animated video with a physician-delivered appeal. The materials presented in each group were randomly assigned to provide the investigators with feedback about all the materials while limiting individual participant burden.

Analysis

A multistage thematic analysis was conducted by the interdisciplinary team. After a review of all transcripts, a comprehensive codebook was developed and included prefigured codes developed from the interview guide, as well as emergent codes identified during transcript review. A.R. led coding and met regularly with E.T.W. and E.R. to discuss coding approach, code summaries, data interpretation, and theme development. Comprehensive analysis included within and across group analysis and focused on the identification of key contexts, conditions, and patterns relating to communication experiences and educational needs and preferences. These methods were enhanced by NVivo (QSR International).

Results

Participant characteristics

Among 28 participants, mean age was 62.0 years (standard deviation [SD] = 7.2). Participants had a mean of 31.1 (SD = 10.8) pack-years of smoking, and among the 8 (25.8%) that were smoked in the past, a mean of 3.4 years (SD = 1.9) since quitting. Most participants were non-Hispanic White (n = 18, 64.3%) or non-Hispanic Black (n = 6, 21.4%), currently smoking (n = 23, 74.2%), had no family history of lung cancer (n = 21, 77.8%), and had never had a LDCT scan (n = 15, 53.6%; Table 2).

Table 2.

Participant Characteristics, N = 28

Characteristic	Mean (SD)
Age (years)	62.0 (7.2)
Body mass index (kg/m²)	30.5 (7.6)
Pack years of smoking	31.1 (10.8)
Years since quitting^a	3.4 (1.9)

	N (%)
Race/ethnicity
Hispanic	2 (7.1)
Non-Hispanic Black	6 (21.4)
Non-Hispanic White	18 (64.3)
Non-Hispanic Multiracial	2 (7.1)
Education
Less than high school	3 (10.7)
Vocational or technical school	2 (7.1)
Associates degree or some college	8 (28.6)
Bachelor's degree	9 (32.1)
Graduate or professional degree	6 (21.4)
Currently smoking	23 (74.2)
Formerly smoked	8 (25.8)
Family history of lung cancer
No	21 (77.8)
Yes	6 (22.2)
Missing	1
Personal history of cancer
No	20 (83.3)
Yes	4 (16.7)
Missing	4
Personal history of bronchitis or COPD
No	23 (82.1)
Yes	5 (17.9)
Time since last primary care visit
In the past year	25 (89.3)
1–2 years ago	2 (7.1)
2–3 years ago	1 (3.6)
Ever had low dose CT scan
No	15 (53.6)
Yes	10 (35.7)
Not Sure/Don't know	3 (10.7)
Time since last low dose CT scan^b
In the past year	7 (70.0)
1–2 years ago	2 (20.0)
2–3 years ago	1 (10.0)
Recruitment source
Community Health Center	2 (7.1)
Hospital System	8 (29.6)
Research Match	18 (64.3)

Among individuals that formerly smoked.

Among those reporting a previous low dose CT scan.

COPD, chronic obstructive pulmonary disease; CT, computed tomography.

Factors influencing LCS decision-making

Five main themes were identified with respect to decision-making: (1) Health care provider recommendation; (2) Self-advocacy; (3) Insurance coverage and cost; (4) Family; and (5) Interest in early detection (Table 3). Other factors included having symptoms, stigma around smoking and lung cancer, and logistics (travel, scheduling, etc.).

Table 3.

Focus Group Themes and Representative Quotes Regarding Factors Influencing Lung Cancer Screening Decision-Making

Theme	Representative quote(s)
Health care providers	“Well, I think I would pay a little more attention to it and think about it a lot more strongly [if my doctor recommended it]. Because I have a lot of faith and hope in my doctor, and if my doctor's suggesting something to me, there's a reason for it.” “If they think I should get it, I will get it, but my primary care person, again, I think if I bring it up, she would probably think it's a good idea. She and I would talk about it…if they recommend it, I'm more than happy to go get it as long as it isn't gonna cost me huge dollars or something. And even then, you know, depending on how much it was, I would listen definitely.” “Well, for me, that was everything. The doctor recommended it and I said, yeah, that sounds like a good idea. I hadn't thought about it on my own.”
Self-advocacy	“Yes, I have [asked about LCS]. And I mean, it kind of pissed me off that I have to ask because I shouldn't have to. I mean, when you get a certain age, you have a colonoscopy…you have mammograms. What's so different? I guess maybe because I smoke cigarettes…But for some reason, lung cancer screening, it was something that I did not know…that they offer on a regular basis after you reach a certain age, or if you have a certain history. But it wasn't offered to me.” “I actually brought it up to her [my doctor] because I follow US Preventive Services Task Force (USPSTF) guidelines on my own. And as soon as I read that was recommended and available, I brought it up to my doctor and said, I want one of those.” “I recently asked my doctor about getting screened for lung cancer, and she said that I was not at a high risk. I didn't really know what my risk was, but I asked my doctor, and she said that it was not appropriate for me to get screened. So, I guess my risk must be low…I actually would like to get screened…my doctor said no, basically. She's not gonna, whatever they do, refer you for it.”
Insurance coverage and cost	“Well, I always have concerns with insurance. My husband pays out of his pocket like crazy at his job for insurance, but…Even the Pap smear is a copay. I mean, a lot of the stuff that's copay I'm fine with, but the stuff that's not covered under a copay, yeah, I'm very concerned about that…I'm concerned about the bills that come in the mail.” “…if I did call the insurance company and they said the lung thing is free, I would do it. If they said it was going to be $2,000, I probably wouldn't. “If it was a free screening, I'd be on it in a heartbeat, just from the history of my uncle and my grandfather.” “Well, I'm on Medicare and I'm not sure what the coverage is there. Again, I've never been advised to have that test. But…even if Medicare did not cover it and if it was a reasonable price, I would—I think it would be a good idea to have that test.”
Family	“Well, what motivated me to ask for the screening was when my brother-in-law was found dead in his apartment and I found out—he had just visited me. And about two weeks later, he was dead. But I noticed when he visited me that he didn't look the same. And I found out afterwards that he had lung cancer, and I said oh, my God. So that was the motivation for me to talk to my doctor about it.” “I want to be around to see this young man [grandson] grow and see what he's going to do with his life.”
Early detection	“I have one friend whose husband was diagnosed very early and they did a very minor surgery on him and he's fine. He smoked like a chimney forever and ever, so that was pretty amazing. I think that the worst cases that I've seen involve late stage where it's already metastasized to other places in the body and that can be just about impossible to overcome from what I've noticed…” “Well, I guess it's good to catch it early, but I don't know if it's gonna really save you. I don't know. I always think of lung cancer as not being curable.” “I have a very high opinion of finding these things early through screening.”

Participants had varying perspectives on the extent to which doctor's recommendation played a role in decisions around LCS and expressed tension between their responsibility to proactive versus the providers' responsibility to offer LCS (Table 3). Some participants had full trust in their provider and assumed that their provider would suggest LCS if it was needed. These participants noted that they would likely be screened if it was suggested by their provider, or they'd already had LCS after a provider recommendation. Several participants were surprised that their provider had not yet recommended LCS, and one participant noted that she had asked her provider about getting screened, but her request was denied. Others noted that while a doctor's recommendation could affect their LCS decision-making, they preferred shared decision-making. Participants expressed the need to self-advocate, be assertive, and even pushy with providers to get care or screening they saw as important. For example, several participants felt that they would have to initiate the conversation with their providers and request LCS to get it done. A few expressed frustrations that responsibility fell on patients to request screening, while others recounted their positive experience in bringing screening to the attention of their providers and getting it. Several said that they planned to discuss screening with their providers at their next appointment.

Participants reported concerns about whether insurance would cover LCS and out of pocket costs were a common concern, with participants noting that lower cost (or free) screening would be an important facilitator. Most participants believed that early detection could result in better health outcomes (extended life, decreased deaths), even if lung cancer was not curable. Participants wanted to stay alive for their grandkids and not be a burden on their children. Others described having their family encourage them to stop smoking and/or get LCS. Two participants had experiences with lung cancer and death with friends and family that motivated them to get screened. Conversely, there was one individual that asserted that nobody else had influence on her health decisions.

LCS information needs

Participants' LCS information needs fell into three main domains (1) Screening process, (2) Results, and (3) Cost (Table 4). Additional questions and topics of interest focused on side effects, the possibility of alternative tests, and reasons why a doctor might not suggest the test. Participants wanted more information on LDCT, including how to prepare for screening, how invasive the procedure was, if it used dyes or contrast, how screening frequency type of machine used, and how long the procedure would take. Participants wanted to know how well the test worked, what it might not be able to detect, and how long it would take to receive results. Participants also wondered what they should do with positive or negative results, what next steps would be, and where they should turn if they had cancer. As described earlier, cost and insurance coverage for LCS were also important questions for participants.

Table 4.

Focus Group Themes and Representative Quotes: Lung Cancer Screening Information Needs

Theme	Representative quote(s)
Screening process	“I think [I'd need to know] just what's involved. You know…the time that it takes. And for me, contrast or not contrast is a big thing because I have terrible, terrible veins and anything that's gonna—that I'll have to have an IV for, I probably wouldn't do.” “One question I had is, oh, you shouldn't be getting this if you had a cough or something. And I'm like, wouldn't this diagnose more advanced lung cancer too?” “How often should it be done? That's my other thing because I guess it's been a little over a year since I had that done.” “A description of what it is and what the screening entails, how often you should have it done, like if you have smoked for five years, if you're at this age 50 or whatever. Some kind of information like that. And even the benefits of not smoking or—you know what I mean?” “Which—what doctor would you talk to…would you talk to your primary care physician about this?”
Results	“I think wanting to know how long before the results are—how long does it take to get the results and what's the best plan—the quickest, the best, and most effective plan after that, if it does come back—the test comes back positive. If it's a negative, you brush your head off with a flare of luck. But the fear of waiting for test results has stopped me from getting [one].”
Cost	“I think, for me—I'm on disability, so whether or not it was even covered. Is that something that I could afford?”
Benefits and risks	“If there are other tests available, what would be the benefit to—statistically how much more effective is the LDCT for screening compared to, say, a chest x-ray? I'm pretty sure that I already know the answer to that, but I think it would be helpful to, if you're trying to inform people, to point out the benefit of one over the other or just the inability for a chest ray, for example, to pick up some of the things that you can see on a CT just by the difference in the tests.” “What is it gonna miss? Are there cancers that are not detected that might still be there?”

Preferences for LCS information and educational materials

Discussions of preferences for information and educational materials focused largely on (1) Mode of Delivery/Type of Materials, (2) Tone/Approach/Design, and (3) Type of Information (Table 5). Individual preferences regarding the mode of delivery/type of materials varied between participants within and across groups, but there was recognition that the information needed to be short, direct, and engaging. Some individuals expressed strong preferences for print and others for videos, with an equally strong dislike by others. For printed materials (such as brochures or pamphlets), participants expressed a strong preference for bullet points. Furthermore, there was a consistent and strong preference for materials to be provided at the doctor's office and/or by the doctor (e.g., handed out or emailed). Regarding tone or approach, there was an emphasis on making materials eye catching, engaging, and upbeat/hopeful (bright colors, upbeat music).

Table 5.

Focus Group Topics and Representative Quotes Regarding Preferences for Lung Cancer Screening Information and Educational Materials

Topic	Representative quote(s)
Preferred type of educational materials
Multimodal approaches required	“I prefer video, because reading it, something that's in print, it's much harder for me to retain with having chemo fog. And a visual is—it just seems to be a lot more effective for me than reading something over paper that I have to go back and re-read like three or four times to get an understanding.” “I am not overly fond of videos… unless they're trying to show me how to do something like what's involved with the [lung cancer screening] test or something like that. I'd prefer just reading about it. Brochures are good if you can get it at the doctors to kind of alert, focus your attention on that, but that's—yeah. And pictures are good too, but not video.” “I would prefer a brochure or a pamphlet, but then one that would also give me direction to a website where I could get more information.”
Preferred way to receive or access LDCT information
From doctor or at doctor's office	“I know that when I sit in doctors' offices, they have a TV playing with all kinds of education material. If you could get a video on the doctors' office waiting room, that would be helpful.” “I don't think it would be a bad idea for those brochures to even be in a dentist's office.” “I think if my doctor sent it to me, that would be helpful. If she said, I'm gonna send you a video with some information that we think would be helpful. And, as [other participant] said, a two-tiered approach, and here's a brochure with some information. Especially if she really thinks that the LDCT is the best option for me, it'd be good to know.” “I'm distrustful of a lot of them, especially when there's attachments and that, [I] don't open them. So if something I know is coming or I see my doctor's name on it or [her medical group], I would probably open it.
Tone or approach
Limit scare tactics, shaming, or lectures about smoking	“I wish doctors would approach people who smoke differently…I mean, you already know from your patient's chart that they smoke. And instead of telling them not to smoke or offering other ways for them to quit smoking, maybe you can offer those things, but at the end of whatever—the appointment—suggest if there is a lung cancer screening. Give them the pamphlet. Give them the information… maybe if they deliver it in a way that [shows] you really care about me. I don't feel like you care when you're berating me.” “I don't like lectures about smoking.” “I have to say that I'm tired of people preaching to me, okay? I know. You don't have to keep telling me [not to smoke]. Okay? So, get off my back, but give me—do something a little more positive, not so preachy, not so—don't try to shame me.” “For me, personally, scare tactics don't work. I just ignore them. It must be something that touches my heart and really connects with me. Maybe a testimonial from someone would be better—but it can't be a scare tactic because that really [turns] me off.”
Positive messaging with focus on benefits of screening	I think more of something happy and something uplifting would help all us that are in fear of taking any kind [of test].” “There was one thing in the video that I think really needs to go in the brochure, where she talked about out of every 320 screenings, 1 life is saved. That's the kind of concrete benefit, and I think [other participant] was talking about this with the pamphlet. You need to see the benefit. That's a very concrete benefit that really stood out to me because I may be one of the 319, but I could be that 320th person whose life is saved.” “Something that's more hopeful and life affirming than the serious look. I think everyone knows how serious lung cancer is, but we want to see the light at the end of what the screening's doing for us.”
Key content
Emphasize early detection and its benefits	“is there information on like early detection and the rate of survival from early detection?” “And I'm thinking that early detection, early cure is the tagline for most of them, and it makes a lot of sense and people are used to hearing it .” “[I'd like a] picture of a survivor with a note saying, I survived note cancer. [Another participant]: Yeah. I was screened and I survived lung cancer. It was found early or something like that. That would be something that would be engaging.”
Explain what lung cancer is (e.g., types, stages)	“what is lung cancer? A description of what it is. A description of what it is and what the screening entails, how often you should have it done, like if you have smoked for five years, if you're at this age 50 or whatever. Information like that. And even the benefits of not smoking.”
Lung cancer statistics and risk factors	“I would be interested to see and hear more about the risk for women for lung cancer as compared to men.” “Well, in addition to the gender thing, you might get into the race a little bit, you know, black and white and Hispanic, et cetera. But I do think those kind of statistics are interesting and could motivate you to get moving too.” “who's at high risk? Are you high risk because it runs in the family? Are you high risk because you're asthmatic? Are you high risk because you're a smoker? Are you high risk because you work around asbestos?”
Benefits of quitting smoking	“The information that I'm focusing on right now is where it says quitting smoking at any age can lower the risk of lung cancer. That right there in itself is enough for me to want to pick it up to read as to how I could prevent myself from getting this illness regardless of what looks like.”
Show where and how LCS is done	“I like they showed the [LDCT] machine, just because I hate going in someplace where my head's inside. So, I wouldn't be scared of this one because they're not putting me in a tomb.”
Discuss availability of other tests and potential harms of screening	“I would be curious to have more information about false positive results, how if you have a screening that indicates that there's a problem, then what is the next step and how do they figure out it's a false positive.”
Describe insurance coverage and costs	“I think the insurance, that it could be eligible, should be up near the top a little more.”
Design and style
Use clear concise language	“I prefer text documents, bulleted lists, paragraphs…and illustrations. Preferably with links and references provided.” “Don't give me paragraphs and paragraphs. I'm not gonna read it. Nope. Bullet points. And then let me figure out where I wanna go next.”
Diversity of participants needed	“I like the fact that they used African American couple. Because, if I'm not mistaken, Black [people] have a higher rate of cancer rate”

LCS, lung cancer screening; LDCT, low-dose computed tomography.

There were mixed preferences surrounding use of scare tactics, with some participants noting that they don't work while others noted that some fear was okay, but it should be kept light. Other notes on tone included a suggestion to avoid shaming people that smoke, sad or shocking personal stories, and portrayals using fake patients (seen as misleading).

Regarding type of information that should be included on LCS materials, preferred content focused on (1) Early detection and its benefits; (2) Lung cancer description (e.g., types, stages); (3) Lung cancer statistics and risk factors; (4) Benefits of quitting smoking; (5) Demonstration or explanation of where and how LCS is done; (6) Availability of other tests and potential harms of screening; and (7) Description of insurance coverage and costs. Additional information that participants suggested to include were which doctor to speak to about LCS and a focus on statistics on gender and race. A few individuals wanted links to additional resources (e.g., an 800 number to call or link to a peer support group).

Discussion

Our study investigated knowledge and experiences with LCS, identified information needs, and determined information preferences among women. Results of this study indicate that a health care provider recommendation for screening, screening knowledge and self-advocacy, understanding benefits of early detection, costs, and family and friends were important influences on LCS interest and behavior. Information needs centered around the basics of lung cancer and LCS, including statistics, logistics, and an interest in understanding the LDCT process.

Overall, participants preferred positive tone and messaging that emphasized benefits of quitting smoking and obtaining LCS. Our results suggest that physician recommendation, physician use of empathetic and nonstigmatizing language regarding smoking and lung cancer, LCS without co-pay for all, and multimodal LCS educational materials which address that information gaps could be associated with greater LCS utilization among women. These findings are similar to those observed in studies that included men and women.^22,23 This is essential as an estimated 12,000 lung cancer deaths could be prevented yearly if all eligible individuals received annual LDCT.²⁴

Our findings underscore the central role of clinicians, particularly primary care providers, to recommend LCS to eligible patients.^12,13,25 Participants also preferred to receive educational information from their provider or at their provider's office. Provider recommendation is consistently associated with screening across multiple cancer sites, and quality and content of discussion surrounding the recommendation, including enthusiasm, may have an additional and important bearing on a patient's decision to get screened.²⁶ One participant in this study expressed frustration with having to bring LCS up with their doctor and another was rebuffed when they tried to talk about it as their doctor did not deem them “high-risk.” Primary care providers may lack adequate knowledge of LCS eligibility criteria and could benefit from continuing medical education to get, and stay, up to date.²⁷ Reliable electronic health record data on tobacco use, simple tools to determine eligibility, and system-level supports to facilitate discussions during patient encounters are also needed.²⁸ System-level electronic tools could also help address potential gender bias, that is, who is considered for eligibility for LCS. Paired screening approaches whereby patients undergoing breast or colorectal cancer screening, which have much higher screening rates than LCS, are evaluated for LCS eligibility and scheduled could also be effective.^29

–32 With respect to information needs, clinic waiting rooms and other spaces can provide opportunities for education through brochures and videos.

While an enthusiastic recommendation for screening is positively associated with LCS receipt, negative experiences of stigma, including shame and blame around smoking behavior, can negatively impact screening behavior.³³ In our study some participants wondered whether they were being treated differently by their doctors because they smoked and reported feeling lectured, shamed, or berated about smoking. Negative messaging and imagery about smoking can elicit defensive responses in patients, resistance to smoking cessation, and negative perceptions of self.³⁴ Empathetic patient–provider conversations are needed. This can focus on benefits of quitting more so than harms of smoking, use of person-first language, acknowledge the addictive nature of nicotine, and offer resources and support to assist in quitting when ready.³⁵ LCS decision aids can also be a useful tool to support patient–provider communication.^36

–39 Such decision aids can provide a framework for conversations and address stigma around smoking and lung cancer.⁴⁰

Participants indicated that low-cost or free testing would facilitate receipt of LCS. Under the Affordable Care Act (ACA), private insurers are required to fully cover LCS without co-pay for all members meeting USPSTF eligibility criteria.⁴¹ Medicare provides similar LCS coverage; however, their upper age limit is 77 years instead of 80.⁴¹ The biggest coverage gap exists for individuals that are uninsured or have Medicaid, a population that, because of socioeconomic disparities in smoking rates,⁴⁰ is enriched with persons eligible for LCS. Medicaid covers LCS without co-pay in the 39 states that expanded Medicaid under the ACA.⁴¹ However, despite relatively high smoking prevalence, most of the southeastern United States⁴² chose not to expand Medicaid and therefore have the dual problem of a higher proportion of residents without insurance coverage and lack of coverage for LCS among those with Medicaid.

Uniform coverage of LCS without co-pay for all elgible Americans would enable greater LCS uptake. Interventions like the National Breast and Cervical Early Detection Program,⁴³ which funds breast and cervical cancer screening and diagnostic services among individuals with low incomes who do not have adequate insurance, is a potential model for expanding access to LCS.

We had difficulty enrolling participants to this study due, in part, to the COVID-19 pandemic, but also due to a large proportion of screened participants failing to meet USPSTF LCS eligibility criteria. We hoped that shifting to the updated USPSTF guidelines would increase our yield, and it did as 15 of the 28 individuals that completed a focus group (53.6%) would not have been eligible under the 2013 guidelines. However, even using the draft 2020 guidelines 39 of 77 (50.6%) of interested individuals were still not eligible because they either quit >15 years prior or smoked <20 pack-years. Our experience is consistent with multiple reports showing that the proportion of Black and female lung cancer patients that met USPSTF 2013 eligibility criteria was significantly lower than white and male patients, and while 2020 guidelines close the gap, they do not eliminate it.^44
–46 Even the NELSON trial has been criticized for its low enrollment of women (16%).⁴⁷ This is despite evidence that for a given level of smoking, women have greater susceptibility to lung cancer than men.⁴⁸

Our study has several important limitations, including its cross-sectional nature, inclusion of only English-speaking participants, and potential selection bias. The cross-sectional design means that we cannot evaluate how educational needs and preferences are associated with longitudinal screening behaviors. While our study enrolled a diverse population of women, all interviews were conducted in English and therefore our study does not address the potentially unique experiences and needs of non-English speaking individuals. Finally, it is possible that women who chose to participate in our study were more interested in learning about LCS, had greater preexisting knowledge, and greater access to LCS than those not enrolled. However, that this population still experienced knowledge gaps and challenges with LCS communication suggests that the problem may be even worse in the broader population.

Conclusions

To increase uptake of LCS in women we need better systems to identify eligible women, improved frequency and quality of health care provider communication about, and recommendation for LCS, and accessible educational materials that address women's information needs.

Footnotes

Acknowledgments

The authors sincerely thank the study participants for making the research and this article possible. The authors also appreciate the assistance of staff from the Dana-Farber Cancer Care Equity Center.

Authors' Contributions

The authors confirm contribution to the article as follows: study conception and design: E.T.W. and C.S.L.; data collection: E.T.W., A.R., and E.R.; analysis and interpretation of results: E.T.W. and A.R. All authors contributed to draft article preparation, reviewed the results, and approved the final version of the article.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author, E.T.W. The data are not publicly available due to their containing information that could compromise the privacy of research participants.

Disclaimer

The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the article.

Author Disclosure Statement

C.S.L. has a consulting or advisory role with Lilly and Bristol Myers Squibb Foundation. E.T.W. has a consulting or advisory role with Astra Zeneca. The study authors have no other interests to report.

Funding Information

This study was funded by a grant from the National Cancer Institute (Grant No. P30 CA006516-54S8).

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