High-risk community and primary care providers knowledge about and barriers to low-dose computed topography lung cancer screening

High-risk community and primary care providers knowledge about and barriers to low-dose computed topography lung cancer screening

Lung Cancer 106 (2017) 42–49 Contents lists available at ScienceDirect Lung Cancer journal homepage: www.elsevier.com/locate/lungcan High-risk comm...

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Lung Cancer 106 (2017) 42–49

Contents lists available at ScienceDirect

Lung Cancer journal homepage: www.elsevier.com/locate/lungcan

High-risk community and primary care providers knowledge about and barriers to low-dose computed topography lung cancer screening Vani N. Simmons a,b,c,∗ , Jhanelle E. Gray b,c , Matthew B. Schabath b,c,d , Lauren E. Wilson a , Gwendolyn P. Quinn a,b a

Department of Health Outcomes & Behavior, H. Lee Moffitt Cancer Center & Research Institute, United States Department of Oncologic Sciences, University of South Florida, United States c Department of Thoracic Oncology, H. Lee Moffitt Cancer Center & Research Institute, United States d Department of Cancer Epidemiology, H. Lee Moffitt Cancer Center & Research Institute, United States b

a r t i c l e

i n f o

Article history: Received 15 July 2016 Received in revised form 12 January 2017 Accepted 21 January 2017 Keywords: Lung cancer screening Focus groups LDCT

a b s t r a c t Introduction: Until recently, there has not been a valid and reliable screening test for lung cancer. As compared to chest X-ray, low-dose computed tomography (LDCT) lung cancer screening has demonstrated greater sensitivity resulting in lung cancer diagnosis at an earlier stage, thereby reducing lung cancer mortality among high-risk individuals by 20%. In the current study, we sought to examine knowledge and attitudes about LDCT screening for lung cancer among an ethnically and racially diverse sample of high risk (HR) community members and primary care providers (PCP). Methods: Eligible individuals participated in a focus group using semi-structured interview guides. Focus groups were conducted with PCPs (by telephone) and HRs (in-person). Sessions were audio-taped and transcribed verbatim. The constant comparison method and content analysis were used to analyze results. Results: The majority of PCPs had limited knowledge of lung cancer CT screening. PCPs cited barriers to recommendation including, cost/insurance barriers and the potential for false positives. PCPs perceived the main benefit to be early detection of lung cancer. The majority of HRs had never heard of lung LDCT screening and had never had a healthcare provider recommend it to them. Perceived barriers included fear of results (bad news) and financial costs. The main perceived benefit was early detection. Conclusion: Lack of knowledge about LDCT was a key a barrier across both the PCP and HR. respondents. Understanding the barriers to lung screening across diverse community populations is necessary to improve screening rates and shared decision-making. © 2017 Elsevier B.V. All rights reserved.

1. Introduction In 2016, an estimated 224,390 new cases of lung cancer will be diagnosed in the United States, resulting in 158,080 deaths [1]. Although mortality rates from lung cancer have declined over the last 25 years, primarily due to decreases in cigarette smoking, lung cancer remains the second most commonly diagnosed cancer nationwide in both men and women, and the leading cause of cancer death [1–3]. Smoking is the chief cause of lung cancer and is

∗ Corresponding author at: H. Lee Moffitt Cancer Center & Research Institute, 4115 E. Fowler Ave, Tampa, FL 33617, United States. E-mail addresses: Vani.Simmons@moffitt.org (V.N. Simmons), Jhanelle.gray@moffitt.org (J.E. Gray), matthew.schabath@moffitt.org (M.B. Schabath), lauren.wilson@moffitt.org (L.E. Wilson), gwendolyn.quinn@moffitt.org (G.P. Quinn). http://dx.doi.org/10.1016/j.lungcan.2017.01.012 0169-5002/© 2017 Elsevier B.V. All rights reserved.

responsible for approximately 90% of lung cancer deaths in the US [4]. Until recently, there has not been a valid and reliable screening test for lung cancer. In 1970, The American Cancer Society (ACS) began recommending lung cancer screening by chest X-ray (CXR) both with and without sputum cytology [5]. CXR has many limitations including high rates of false positives and false negatives [5,6]. Lung cancer mortality rates remained relatively stagnant and ACS retracted the recommendation for CXR for lung cancer screening in 1980 [5]. In 2002, The National Lung Screening Trial (NLST) began an 8 year randomized clinical trial with 53,454 participants [7]. Highrisk (HR) participants were randomized to receive 3 annual lung cancer screenings with CXR or low-dose computed tomography (LDCT). Findings from this trial indicated a reduction in mortality with LDCT. The increased sensitivity of LDCT allowed for easier readability and diagnosis at an earlier stage, thereby reducing lung cancer mortality among HR individuals by 20% [3,5,8,9]. Similar

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clinical trials have been conducted in European countries, such as, the Dutch-Belgian NELSON Trial [10], the UKLS Trial in the United Kingdom [11], the DANTE Trial in Italy [12], and the Danish Randomized Lung Cancer CT Screening Trial [13]. Based on the NLST findings, the United States Preventative Services Task Force (USPSTF) issued a B recommendation supporting LDCT screening for HR individuals defined as individuals ages 55–80, at least a 30-pack year history of smoking, and current smokers or former smokers who have quit within the past 15 years [14]. In January 2015, the Affordable Care Act mandated private insurance companies to cover LDCT for HR individuals [15]. In February 2015, the Centers for Medicare and Medicaid Services (CMS) began covering LDCT screening for lung cancer with a written prescription from a physician and documentation of shared decision making [16]. Nationwide organizational support for lung cancer screening by LDCT has generally been positive. The American Lung Association, American Cancer Society, and American Society of Clinical Oncology support LDCT screening. Conversely, the Academy of Family Physicians concluded the evidence is insufficient to recommend screening [17]. Despite the supportive landscape, LDCT screening uptake appears to be generally low [18]. Wide-scale implementation of LDCT screening relies on primary care provider (PCP) referral. However, little is known about how, or if, PCPs are discussing or recommending LDCT screening. To date, few studies have examined PCPs attitudes and practices regarding lung cancer screening with LDCT. Using survey methodology, Lewis et al. [19] found that few PCPs were ordering LDCT and barriers included patient cost, insurance coverage, and concerns regarding efficacy. In addition to understanding PCP perspectives on LDCT screening, community engagement is imperative. Few studies have examined HR individual perspectives, and the majority has used survey methodology. Identified barriers include lack of knowledge of LDCT screening [20], cost concerns (insurance coverage and possible follow-up procedures) [20,21], and fears of radiation and results [4,20,21]. Given recent changes in coverage for LDCT it is important to learn if cost concerns remain as a perceived barrier to screening. In this study, we sought to examine the barriers to screening, including knowledge and attitudes about LDCT screening for lung cancer among an ethnically and racially diverse sample of HR community members and PCPs (physicians, nurse practitioners, and physician assistants). Together, these data can be used to develop strategies to increase the likelihood that LDCT guideline recommendations are met. Moreover, comparing the perspectives of these two key stakeholder groups can aid in the creation of effective patient-provider communication tools and may reveal gaps in knowledge that support the need for further education. 2. Methods This study was approved by Chesapeake IRB (Columbia, MD). A waiver of written informed consent was obtained. 2.1. Participants Focus group discussions were conducted with PCP and HR community members. Eligible PCPs had an active license as a physician, nurse practitioner, or physician assistant and were working in a primary care setting in the state of Florida; provided health care to patients over age 55; and reported access to a telephone and computer/tablet. PCP participants received $100. The eligibility criteria for HR participants mirrored USPSTF lung cancer screening criteria. Participants were: between ages 55 and 80, had a 30-pack year smoking history, and were a current or former smoker who quit within the past 15 years [14]. Individuals who had a previous

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LDCT screening for lung cancer, or were currently undergoing cancer treatment, were excluded. HR participants received a meal and $30. PCPs were recruited using flyers posted in medical facilities and emails to physician liaison groups. Interested participants called a study telephone number and were screened for eligibility. Providers were scheduled for a 60-min telephone focus group. HR community participants were recruited using newspaper ads, Craigslist, and flyers in local businesses. Eligible community participants who were interested in participating were scheduled for a 1.5 h in-person focus group. 2.2. Focus group procedures 2.2.1. PCP focus groups Participants were asked about their typical cancer screening recommendations for their patients, then specifically about lung cancer screening (see Fig. 1 for PCP focus group guide). Current evidence was presented by an expert in a webinar format, summarizing the results of the NLST and explaining requirements for reimbursement as well as the positives (e.g., early detection) and negatives (e.g., false positives) of LDCT screening for lung cancer. 2.2.2. HR focus groups Participants were asked about their beliefs of cancer screening in general, knowledge of LDCT screening for lung cancer, and future intentions to pursue a LDCT screening(see Fig. 2 for HR focus group guide). Participants then viewed two videos on LDCT screening for lung cancer (a national news story and a promotional video from a cancer center) and were asked to discuss perceived benefits and barriers of testing as well as future intentions. 2.3. Data analysis All focus groups were audio-recorded and verbatim transcripts were created for analysis. Content analysis of the data was conducted using the constant comparative method. We classified the a priori themes related to knowledge, acceptability of evidence, confidence, barriers and facilitators to referrals or screening [22]. We grouped responses into categories of majority- indicating more than 50% of the respondents endorsed the theme; some – indicating 30% endorsement; and a few – indicating less than 30% [23]. 3. Results 3.1. Primary care providers PCP participant (N = 23) characteristics are displayed in Table 1. Major themes extracted from the data analyses are presented below. Representative quotes are provided for each theme in Table 3. 3.1.1. Practice behaviors All providers reported routinely offering traditional cancer screening (mammography, Pap tests, prostate-specific antigen [PSA] discussions, and colonoscopy) to eligible patients. Participants were asked if patients inquired about lung cancer screening and if they recommended it to eligible HR patients. The majority of PCPs stated patients did not inquire about lung cancer screening and they were not recommending LDCT screening. A few PCPs noted that patients’ requested chest X-rays for lung cancer screening. The majority of PCP participants stated they had limited knowledge of LDCT screening, however, they said they would recommend it to their patients, if they had more information.

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Primary Care Provider Focus Group Guide 1. Introductions 2. Review of Procedure 3. Review of eligibility for screening followed by self-intro and estimation of patient percentage that inquire about lung cancer screening 4. Pre-presentation questions a. Currently recommend lung cancer screening for eligible patients? Why? Why not? b. Benefits/Drawbacks of LDCT screening? c. What info do you tell patients about screening? 5. Show presentation with review of current evidence for lung cancer screening 6. Post-presentation questions a. New info for you? b. Any evidentiary gaps? c. Irrefutable evidence? d. View of lung cancer screening compared to other preventative screenings (colon, breast)? e. Situations where you would/would not recommend LDCT? f. Largest patient barrier to screening? g. Would patient education prior to consultation be helpful? h. Who is responsible for patient follow-through with screening and follow-

Fig. 1. Primary care provider focus group guide.

High Risk Participant Focus Group Guide 1. 2. 3. 4.

Introduction/Purpose Review of Procedure Participant Introductions Perceptions of Cancer Screenings a. What have you heard about cancer screenings? b. What comes to mind when you think about cancer screening? c. What have you heard about lung cancer screening? 5. Information Given About lung cancer screening 6. 2 Short Informational Videos Shown 7. Post-Information/Video Questions a. What are benefits of lung cancer screening? b. Reasons less likely to be screened? Lack of Knowledge/education? Insurance? Fear? c. What would prevent you from being screened/make you want to be screened? d. Has healthcare provider ever discussed lung cancer screening with you? e. Would anyone else influence your decision to be screened for lung cancer? f. Where would you go for further information on being screened? Doctor? g. What information is needed to make decision about screening? h. What information is needed to incline you to ask your healthcare provider about lung cancer screening? i. Would you have LDCT if recommended by your healthcare provider? Fig. 2. High risk participant focus group guide.

3.1.2. Barriers to CT screening PCPs were asked to describe perceived barriers to recommending lung cancer screening. The most commonly mentioned barriers were costs and the potential for false positive results. Some providers mentioned lack of understanding of the testing process and follow-ups for abnormal results. The majority perceived that patient resistance and fear were also significant barriers to lung screening. However, they felt most resistant patients could be swayed with education and a tailored discussion. Moreover, some PCPs noted lack of time was a barrier; these PCPs were not only concerned about the time it took to discuss LDCT screening, but also the complexity of the discussion that was needed for the shared decision making requirement.

3.1.3. Benefits The majority of PCPs identified early detection as the main benefit of LDCT screening. Providers stated early detection could improve quality of life and overall outcomes and could motivate smoking cessation. Other noted benefits included that many insurance plans, including Medicare would cover the service, improved accuracy compared to X-ray, a low-dose of radiation, and patient reassurance.

3.1.4. Evidence Almost all providers had a positive reaction to the webinar, stating the information was new, trustworthy, and useful for their practice. A few perceived the screening process to be more complicated after viewing the presentation. However, the majority stated they would now prioritize recommendations for lung cancer screening while a few stated they would only recommend LDCT screening after a suspicious X-ray result. The majority of providers perceived the strongest evidence in support of CT screening were early detection rates and an increase in life expectancy. A few providers commented that LDCT screening was more complex because they are screening an at-risk population of smokers rather than a “healthy” population. Some providers stated a pop-up reminder or a note in the electronic medical record (EMR) system to indicate patient eligibility could facilitate LDCT recommendations. A few providers noted that an LDCT order form would be beneficial. Providers also had additional questions about next steps and repeated screenings.

3.2. High risk individuals HR participant (N = 38) characteristics are displayed in Table 2. Major themes extracted from the data analyses are presented

V.N. Simmons et al. / Lung Cancer 106 (2017) 42–49 Table 1 MD, ARNP, and PA Demographics (N = 23).

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Table 2 High Risk Demographics (N = 38). Total (%)

Gender Male Female

12 (52%)

Age <24 25–34 35–44 45–54 55–64 65–74

11 (48%) 0 (0%) 9 (39%) 3 (13%) 4 (17%) 6 (26%) 1 (4%)

Race White Black or Af. Am Asian Other

18 (78%) 1 (4%) 3 (13%) 1 (4%)

Ethnicity Hisp/Latino Not Hisp/Latino Prefer not to Answer

0 (0%) 22 (96%) 1 (4%)

Provider Type MD ARNP PA

16 (70%) 3 (13%) 4 (17%)

Years Since Professional School Graduation 2010–2014 2000–2009 1990–1999 1980–1989 1970–1979

8 (35%) 6 (26%) 4 (17%) 3 (13%) 2 (9%)

Average Number of 55+ Pts Per Week 0–25 26–50 51–75 75–100 >100

5 (22%) 9 (39%) 3 (13%) 3 (13%) 3 (13%)

Primary Practice Location Private practice Teaching hospital Community-based center University-affiliated center Other

12 (52%) 5 (22%) 3 (13%) 2 (9%) 1 (4%)

Practice Setting Rural Urban Suburban

2 (9%) 11 (48%) 10 (43%)

Physicians in Practice 1 2–5 6–15 16–49 50–99 100+

2 (9%) 15 (65%) 0 (0%) 3 (13%) 1 (4%) 2 (9%)

below. Representative quotes are provided for each theme in Table 4. 3.2.1. Knowledge of cancer screenings Participants were asked their general thoughts about screening tests for cancer, as well as, if they were aware of lung cancer LDCT screening and if any provider had recommended the screening test to them. A few participants mentioned feeling fear or worry when they thought about cancer screening, and indicated fear, particularly of a positive result, has prevented them from pursuing screening. Although most participants were aware of a chest X-ray, the majority had never heard of LDCT screening and were unclear how it differed from a traditional chest X-ray. All participants stated

Total (%) Gender Male Female

19 (50%) 19 (50%)

Age 55–60 61–70 ≥71

21 (55%) 10 (26%) 7 (18%)

Race White Black or Af. Am. Other

23 (61%) 11 (29%) 4 (11%)

Ethnicity Hisp/Latino Not Hisp/Latino Missing

4 (11%) 28 (74%) 6 (16%)

Marital Status Single Married/Living with partner Separated/Divorced Widowed

15 (39%) 9 (24%) 13 (34%) 1 (3%)

Insurance Typea Medicare Medicaid Military/Tricare Private Uninsured Other

18 (38%) 7 (15%) 4 (9%) 12 (26%) 1 (2%) 4 (11%)

Highest Grade Level Completed Some high school High school grad Some college Tech school/Assoc Degree 4 year college degree Professional degree (e.g. MD, JD, PhD)

4 (11%) 8 (21%) 10 (26%) 4 (11%) 10 (26%) 2 (5%)

Age Began Smoking ≤15 16–21 ≥22 Missing

20 (53%) 13 (34%) 4 (11%) 1 (3%)

Current Smoker Yes No

29 (76%) 9 (24%)

Cigarettes Per Day ≤10 11–20 ≥21 Missing

7 (18%) 20 (53%) 10 (26%) 1 (3%)

Times Attempted to Quit Last Year Do not smoke 0 1–2 3–4 5–6 7–10 >10

8 (21%) 7 (18%) 13 (34%) 6 (16%) 2 (5%) 0 (0%) 2 (5%)

Other Smokers in Household Yes No Missing

12 (32%) 23 (61%) 3 (8%)

a

Participants selected more than one response.

no health care provider had ever discussed lung cancer screening with LDCT with them. Participants were asked about specific benefits to lung cancer screening. The majority of participants stated that early detection and receiving the help and information they need if screening results were positive, was the biggest benefit, even if there wasn’t

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Table 3 PCP Key Themes. PCP Barriers

Quote

Practice Behaviors Knowledge and current lung cancer screening recommendation

“Interestingly I don’t have many patients that actually inquire to me, it’s generally I’m telling them about the lung cancer screening recommendations. I haven’t really had anybody yet ask me.” “The recommendation in relatively new and it’s just not something that I’ve added to my recommendations yet.” “I don’t remember exactly what insurance it was now, but they wouldn’t pay for it, and I just haven’t written for it since, because it ended up kind of more of a hassle than I felt like the benefit was worth.” “It’s pretty complex, to get to the right place. . .and the right certification here, and have this. . .it just seems like a lot of red tape.” “I would say financial cost to the patient and maybe other costs to the patient, meaning if they find something and then they do some kind of biopsy.” “When you find a false positive, then you basically unleashed anxiety that wasn’t really necessary.” “As primary care doctors, I feel like there’s just an ever increasing amount of things that we’re responsible for and I definitely see the importance of the screening but. . .there’s only so many things that can be addressed in one visit and sometimes it’s difficult to address acute concerns of chronic conditions for health maintenance, as well as all of the other administrative tasks.” “A lot of patients kind of really tend to push back . . ..and they just feel like they don’t need a screening. ‘Oh well, my mom has smoked for 50 years and she lived to be 90 and she never got lung cancer.”’ “If you can tell most patients why, you have a very good chance of swaying them into doing it. . .if they don’t understand why, it’s less successful. They think it’s just one more task. So I think education is the key.” “From a time perspective. . .to kind of explain all of that in one visit, it would almost take the whole visit itself to kind of discuss that with a patient so that they could understand it. With the population that I see, it’s hard for them to get in as it is. So, in the context of all their other medical problems, discussing things at that level is sometimes a challenge.” “It just seems like a lot of hoops, especially with the Medicare patients. You have to have the right kind of visit, and you have to make sure you do everything according to protocol, and it seems very complicated.” “This specific disease has. . . a very quick aggressive nature that early detection is very important to survivability. . with most lung cancer patients’ mortality rate is very high, and in a very short span of time.” “If they detect something abnormal then maybe that would. . bring some awareness to the patient and help motivate them to quit smoking.” “It’s covered if they meet the criteria. That’s a wonderful thing to know” “The one benefit, obviously, is it gives more information than chest X-ray.” “It’s very new for me and I like the way that it’s a systematic approach. It’s not just something that’s going to be out there and used haphazardly.” “It was a very nice review of what I kind of thought the status was. Certainly there were some things in there that I didn’t remember but it was basically a nice review of where we are (with the evidence) I think.” “I think it’s a lot more complicated than I appreciated initially, after seeing all of this.” “I didn’t know that there were so rigorous things that they had to go through. Like the radiologist has to be specially trained. . .” “It just reminded me it’s probably more important to shift it up on my priority list of things to get done for my patients.” “I haven’t implemented [LDCT] counseling into my practice yet but it’s a good reminder that I need to start doing it.” “I’ll often just get them a chest X-ray and tell them I have a very low degree of suspicion. That if we find anything at all, to just get a CT, I have no problem ordering it.” “I think that you know, the evidence of the LDCT finding earlier stages of cancer is probably the take home message that I would share with the patient if I were to counsel a patient about getting the screening done.” “The survival benefit. . is the biggest, we do a lot of things in medicine that don’t have a clear survival benefit so obviously things that do, we should probably be as aggressive as we can about adopting or at least recommending.” “Further down the line, if it was something that was included in the EMR, in the healthcare maintenance, it would be something that would trigger me to counsel patients more often about it.” “If there’s a way for this to be integrated into an EMR reminder; that would probably be the most effective way to get the word out to providers.” “I tend to like preprinted order forms, so that I can check the boxes, check the diagnosis code on there.” “I think it’s dissimilar in that we’re usually screening healthy populations. On lung cancer, by the time they’ve smoked 30- pack (years), most of the time they have a lot of comorbidities as well. So we have to take that into account. Like, it’s much more complex than screening healthy people for colon and breast cancer.” “If someone refuses to quit smoking, do they therefore have an annual screening LDCT or how does that work?” “When would you repeat? Did I understand that they were to be redone annually?”

Uncertainty of recommendation

Barriers to CT Screening Cost to patient False positives Lack of time

Patient resistance

Complexity of patient discussion

Benefits Overall outcome improvement Motivate smoking cessation Insurance coverage Improved accuracy Evidence New information

Complicated and overwhelming

Reminder to prioritize LDCT lung cancer screening recommendation

Would recommend after other suspicious result Strong evidence for early detection and increased survival rates

Useful tools for implementation

Difference from other cancer screenings

Unsure of next steps

a cure. A few participants stated it would be better to know if they had cancer and avoid future regrets and worry.

3.2.2. Barriers to lung cancer screening Participants were asked about perceived barriers to getting to LDCT screening. The most common concern among all participants

was the fear of bad news (cancer diagnosis). The majority had additional concerns about associated monetary costs, and questioned whether the screening would be covered by their health insurance. A few participants feared the test would have inaccurate results (false positives). A few others had concerns about the process of making an appointment and taking time off work.

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Table 4 HR Participant Key Themes. HR Knowledge, Barriers, and Perceptions

Quote

Knowledge of Cancer Screenings Feelings invoked by thought of cancer screening

“The word itself, strikes fear. Not only for myself, but for anybody I know that has cancer.” “It’s kind of scary to me because my parents passed away with cancer. But I just don’t try to take it in my hands; I just try to leave it to higher power.” “I get scared thinking about screenings − scared if I got it (cancer)” “They said I had a spot on my lung (from CXR) and 2 months later it was gone, so, what’s that?” “I just made sure I got my mammogram done every year, and I figured at that time, they would be looking at my lungs anyway.” “I guess, my assumption is, that lung cancer screening begins with a chest X-ray. Is that correct?” “I had my physical this morning and my doctor knows I have been smoking for over 60 years, I bet you know her, she’s great. So, how come she didn’t suggest to me a low dose screening chest CT? If you smoke like I do, why wouldn’t your doctor say something?” “Okay, maybe the damage is done but if you get an early screening, you can save your life, its treatable, the earlier you get a screening, the more treatable it is.” “And early detection if you have, like they said, The size of a grain of rice. That’s remarkable to discover that.” “I wouldn’t be able to pay the $200.00. I would love to get one if it was provided to me. If I have to pay for it, no.” “See, that’s the whole reason I don’t go to doctors. They always give you bad news. If they can’t find nothing that you’re there for, they will find something else.” “Why can’t I do it at 7:00 at night? Why can’t I do it on Sunday afternoon? Why can’t I do it on my way to Wal-Mart on Saturday?” “First thing is your primary care physician. He should be the point man to point you in the right direction. He should be.” “I find myself, using a nurse practitioner as my primary and checking with nurses for their opinions on stuff because I think, they are a lot more grounded and a lot more realistic than doctors.” “It’s a really personal thing; I don’t really need to discuss it with anybody.” “The first thing I thought of was, what’s the cost of getting a CAT scan as opposed to the chest X-rays. I know my HMO, I can bet dollars to doughnuts they wouldn’t pay for it.” “I don’t (know) at what age should you start being checked? Especially if you’ve been a smoker for a long period of time.” “Does being a woman change my risk? Do I need the same kind of detection that a man might need?” “And you know another problem? If they misdiagnose, that’s another problem.” “How accurate is the test? Will I get a false positive?”

Confusion and misunderstanding

Not brought up by provider

Perceived benefits to screening

Barriers to Lung Cancer Screening Cost False positives Inconvenient Decisions about use of Lung Cancer Screening Informational and discussions and shared decision-making Information needed

Accuracy of test

3.2.3. Decisions about use of lung cancer screening Participants were asked how they would get information about lung cancer screening if they wanted to learn more, with whom they would discuss the decision, and what information they would need to make a decision about getting a lung cancer screening. The majority of participants wanted to discuss screening only with their primary care physicians. A few participants indicated they would rather speak to a nurse. A few others stated they make their own health care decisions and would not discuss with anyone. The most common informational needs noted by all participants were: cost and risk factors/eligibility. The majority wanted to understand the process of receiving results. After viewing two brief videos that explained the LDCT screening for lung cancer, participants were asked if they were considering getting a LDCT screening. The majority of participants indicated they would get screened if recommended by their doctor. A few participants clarified that they would only proceed if covered by their insurance. 4. Discussion Despite recent changes in the screening landscape, including insurance coverage, lack of knowledge about LDCT and cost concerns were key barriers reported by both the PCP and HR respondents. PCPs reported recommending traditional cancer screening tests (e.g., mammography for breast cancer) for their patients, but noted LDCT screening was not yet part of their repertoire and differed from traditional cancer screenings because the LDCT eligible population was typically not “healthy.” Additional frequently mentioned barriers for PCPs were that patients were not inquiring about lung cancer screening, their own limited knowledge about eligibility, and the time involved discussing the process with patients. The presentation of evidence in a webinar format

was highly acceptable to PCPs and all reported learning a great deal which would encourage them to offer it in the future. This is in contrast to a study of PCPs in New Mexico who questioned the NLST results and viewed high rates of false positives as a deterrent to recommending LDCT [24]. The promise of early detection was a strong motivator to have shared decision making discussions with HR patients; however, questions remained regarding the process of referrals and follow-ups for abnormal results. Additional barriers included fears about the results and cost concerns. These barriers are in line with research conducted among individuals who declined participation in the UK Lung Cancer Screening pilot trial [25]. Both emotional (i.e., fear) and practical concerns (e.g., travel difficulties) emerged as barriers. Among the HR group there was little knowledge about LDCT screening and confusion over the process of screening and distinction from chest X-ray. Supporting the generalizability of our findings, these results are consistent with a recent study conducted with low-income, racially diverse outpatients at an urban community hospital [26]. In addition, there was concern about why their PCP had not recommended the screening, particularly given their providers awareness of their smoking history. After learning about LDCT screening, the majority of participants reported that they would participate in LDCT screening. These results mirror Delmerico et al. [27], who conducted a random telephone survey of 1290 current and former smokers and found that the majority would seek a CT screen if recommended by their doctor. Similar to previous findings, our participants noted the prime benefit was early detection, but had concerns about costs to conduct the screening and future costs associated with an abnormal screen [4,27]. Our findings suggest the need to educate PCPs and HR individuals regarding the recent coverage of LDCT screening via CMS and the ACA. As identified in a recent study conducted by Mazzone and colleagues (2016), a counseling and shared decision visit can be

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effective for significantly increasing knowledge of the benefits and harms of screening [28]. The majority of our HR participants viewed their PCP as the person from whom they would wish to learn about and discuss the LDCT screening process. Prior research has also found that PCPS were considered the most trustworthy and reliable source of information about lung cancer screening and that discussions between PCPs and patients could reduce concerns about lung cancer screening uncertainty [20,29]. Despite an interest in such conversations, our findings suggest this is not occurring thus supporting the need to improve patient-provider communication on the topic. As noted by Kandora et al., 2016, such conversations could be facilitated with the addition of EMR-embedded reminders and decision aids [30]. It is noteworthy that PCPs are a necessary, but not sufficient, factor to optimizing lung cancer screening. In a joint policy statement from the American College of Chest Physicians and American Thoracic Society, nine essential components were identified for dedicated lung cancer screening programs including factors such as smoking cessation, patient provider education tools to assist patients in making value-based decisions, structured reporting, and lung nodule management algorithms [31]. This study is not without limitations. First, the results, as with most qualitative research may not be generalizable to other geographic regions or populations. Knowledge of and access to certified LDCT screening centers may differ across regions and states and this may impact providers’ willingness to recommend screening, particularly those working in rural areas. In addition, the perspectives of high risk individuals without medical insurance were not well-represented in our study sample. There is a need to develop innovative recruitment strategies for reaching underserved high risk populations. This includes, but is not limited to, engaging community based organizations that have existing rapport with these populations and may facilitate recruitment. Second, although PCPs reported an increase in knowledge about LDCT after the webinar, our study did not include a quantitative measure to capture changes in knowledge. Third, although our HR sample was racially diverse, our methodology precluded us from examining barriers by race/ethnicity. Prior research has found lower intention to screen due to costs was a significantly greater barrier reported by Hispanic individuals [21]. Thus, additional research is warranted to determine the need for targeted LDCT education efforts. 5. Conclusion The possibility of early detection via LDCT, combined with growing organizational support and insurance coverage, has created an unprecedented opportunity to reduce lung cancer mortality. Both HR participants and PCPs were not knowledgeable about LDCT screening and recent changes in insurance coverage suggesting a potential educational opportunity. Engaging both the medical community, and those at increased risk for lung cancer is paramount for successful implementation. Educational materials should be made available to PCPs and patients for use in waiting rooms to increase awareness about LDCT screening and to stimulate physician-patient communication and shared decision-making. Efforts are needed to educate PCPs about lung cancer screening guidelines and insurance coverage. Referral tools such as pop-up reminders and electronic forms with a list of pre-identified sites and radiologists certified in LDCT screening would facilitate the referral process. Acknowledgment This work was supported by the Florida Department of Health, James and Esther King Biomedical Program Grant 4KB17.

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