The quality of patient decision aids for lung cancer screening: Results from an environmental scan

Abstract

Shared decision making is recommended for lung cancer screening (LCS) by professional organizations and payers. Patient decision aids can be used to support shared decision making, but they need to meet quality standards to minimize the potential for biased and poorly informed patient decisions. After the updated LCS recommendation from the US Preventive Services Task Force in 2021, the authors conducted an environmental scan of public‐facing patient educational materials and evaluated them against criteria from the International Patient Decision Aid Standards for high‐quality patient decision aids. The Google site search function was used to search websites from National Cancer Institute‐funded cancer centers, professional societies, patient advocacy groups, cancer coalitions, and private organizations for educational materials on LCS. A general web search using Google, Google Scholar, and select databases was also conducted. Considerations unique to the LCS context (e.g., the importance of annual screening and smoking cessation) were documented. The search identified 96 educational materials that included information about both benefits and harms of LCS. Of these, 39 did not meet qualifying criteria for decision aids, with failure to explicitly identify LCS as a decision being the primary reason for exclusion. Only 10 of the remaining decision aids met quality criteria from the International Patient Decision Aid Standards. These aids emphasized that LCS should be performed annually, most avoided stigmatizing language, and several included personalization features using prediction models. Clinicians and patients can be confident in using these high‐quality aids to complement the process of shared decision making for LCS. Validated aids in languages other than English and Spanish are needed.

Short abstract

Patient decision aids can be used to support shared decision making for lung cancer screening, but they need to meet quality standards to minimize the potential for biased and poorly informed patient decisions. The authors identified high‐quality patient decision aids emphasizing that lung cancer screening should be performed annually and avoided use of stigmatizing language, and several aids included personalization features using prediction models.

INTRODUCTION

Lung cancer remains the leading cause of cancer‐related deaths in the United States, with the American Cancer Society (ACS) projecting 234,580 new cases and 125,070 deaths from lung cancer in 2024. ¹ Large, randomized trials have shown that lung cancer screening (LCS) with low‐dose computed tomography (CT) is effective at reducing deaths from lung cancer. ² , ³ LCS is also associated with some risks, including overdiagnosis, false positives, anxiety, radiation exposure, financial toxicity, and potential harms from further testing if something abnormal is found. ⁴ The US Preventive Services Task Force (USPSTF) recommends LCS for persons at high risk of lung cancer because of age and smoking history while also emphasizing the importance of shared decision making between patients and their health care providers in making a screening decision. In 2021, the USPSTF issued an updated recommendation about LCS that expanded eligibility ⁵ and retained a grade B recommendation with continued emphasis on the importance of shared decision making for LCS. The Centers for Medicare & Medicaid Services (CMS) goes a step further by requiring the use of patient decision aids during a counseling and shared decision‐making visit about LCS for the first screening CT. ⁶ Recently, the ACS updated its LCS guideline, emphasizing the importance of shared decision making while removing the years‐since‐quit criterion, a change that increases the eligible population in the United States by 4.9 million individuals to 19.2 million. ⁷ , ⁸

High‐quality patient decision aids are vital in these contexts because they provide information about the risks and benefits of a test or treatment, helping patients align their choices with their personal values. ⁹ Patients who use decision aids have improved knowledge about their choices, reduced decisional conflict related to feeling uninformed or unclear about their values, and are more actively involved in decision making compared with those who do not use patient decision aids. ⁹ There are unique considerations in providing decision support to persons who currently smoke cigarettes or have smoked in the past, including recognition that blaming and stigmatizing language has the potential to undermine discussions about lung cancer and early detection. ¹⁰ Persons who experience stigma when discussing LCS may be less likely to pursue screening. ¹⁰ Various organizations (i.e., cancer centers, professional organizations, nonprofit organizations, etc.) have created educational materials to help patients understand LCS, guide their decision, and promote screening. However, it is unclear whether these materials meet quality standards for patient decision aids and minimize potential harm to patients that can occur when poorly developed aids are used. ¹¹ Furthermore, these materials need to reflect the most recent update to the USPSTF recommendation. ⁵ In this environmental scan, we evaluate the content of publicly available patient decision aids for LCS against international quality standards. We further report on characteristics and content of the decision aids unique to the LCS context.

MATERIALS AND METHODS

The protocol for this review was registered on Open Science Framework on March 14, 2022, under registration DOI https://doi.org/10.17605/OSF.IO/VFTWZ.

Eligibility criteria

This review focused on publicly available, consumer‐focused educational materials about LCS that were available after the release of the USPSTF's 2021 update to their LCS recommendation. To be included in our environmental scan, the material needed to mention both benefits and harms of LCS. In addition, we limited the search to English‐language versions and noted when other versions were available. Inclusion was further limited to developers in the United States.

Search strategy

Three reviewers (including G.F.D.) conducted the search for available LCS educational and decision support materials in July and August of 2021. The reviewers searched gray literature using Google, UpToDate, TRIP, and websites for National Cancer Institute (NCI)‐designated comprehensive cancer centers, professional organizations, government organizations, nonprofit organizations, cancer networks, private companies, and advocacy groups. Reviewers used the Google site search function with the search terms listed in Table S1 and reviewed the first 10 pages returned from the search. For the other sources, keyword searches were used to identify materials about LCS. We supplemented the gray literature search with PubMed searches for LCS decision aids published through March 31, 2024.

Selection process

Up to three reviewers searched each website for educational materials about LCS. The reviewers then met to achieve consensus on the inclusion of retrieved educational materials. Aids identified through these searches were reviewed in March and April 2024 to check for any updated material that would affect eligibility. For example, aids that were initially excluded because screening eligibility criteria had not been updated to reflect the USPSTF 2021 recommendation were reviewed again in March and April 2024 to capture the most recent versions of the aids. Selection, rating, and extraction were documented using Research Electronic Data Capture (REDCap). ¹² , ¹³

Rating patient decision aids against International Patient Decision Aid Standards

The International Patient Decision Aid Standards (IPDAS) Collaboration is an international, volunteer organization focused on the development, content, and evaluation of patient decision aids that follow standards for minimizing bias to patients. ¹¹ The standards define seven criteria required to determine whether educational material qualifies as a decision aid (i.e., qualifying criteria). For those educational materials that qualify as decision aids, there are 10 criteria deemed essential to be considered as high quality (e.g., disclosing the funding source for developing the aid), including four criteria specific to screening tests (Table 1 for qualifying and essential criteria).

TABLE 1.

International Patient Decision Aid Standards for patient decision aids.

Criteria type	List of criteria
Qualifying criteria	Describes the health condition or problem for which the index decision is required. Identifies the target user. Explicitly states the decision that needs to be considered. Describes the options available for index decision. Describes the positive features (benefits or advantages) of each option. Describes the negative features (harms, side effects, disadvantages) of each option. Helps patients clarify their values for outcomes of options by asking people to think about which positive and negative features of the options matter most to them and/or describing each option to help patients imagine the physical, social, and/or psychological effect.
Essential criteria	Shows the negative and positive features of options with equal detail (e.g., using similar fonts, sequence, presentation of statistical information). Provides information about the levels of uncertainty around event or outcome probabilities (e.g., by giving a range or by using phrases such as “our best estimate is…”). Provides a production or publication date. Provides information about the funding source used for development. Provides citations for scientific evidence selected. Provides information about the update policy. Describes what the screening text is designed to measure. Describes the next steps typically taken if the screen test detects the condition or problem. Describes the next steps if the condition or problem is not detected with the screening test. Has information about detection and treatment of disease that would not have caused problems if screening had not been done.

IPDAS qualifying criteria

Two reviewers (J.S.L. and G.F.D.) independently evaluated each candidate decision support material’s adherence to the IPDAS qualifying criteria using a data form. We excluded materials that otherwise met qualifying criteria for decision aids if any of the following were noted: (1) the aid did not use updated eligibility criteria (either CMS 2022 or USPSTF 2021); (2) the purpose of the aid (e.g., “you have a decision to make about lung cancer screening”) was not clearly stated at the beginning of the information; (3) the aid targeted users other than patients, such as clinicians; (4) the format was a blog, interview, or press release; (5) the aid contained advertisements within or adjacent to the text; or (6) the aid was promotional by encouraging screening at a specific LCS program. The reviewers met to discuss their evaluations and reached a consensus for each material. Any discrepancies were discussed with a third party (R.J.V. and K.G.M.) for a final decision. Materials that failed to meet the full criteria to qualify as a patient decision aid or the other criteria listed above were eliminated. Materials that met the full criteria to be considered decision aids were evaluated against the IPDAS essential criteria.

IPDAS essential criteria

Decision aids were reviewed independently amongst reviewers (K.G.M., E.E.D., J.S.L., and G.F.D.) against the IPDAS essential criteria and then reviewed in groups to achieve consensus. Decision aids that met the essential criteria (i.e., high‐quality aids) were moved to the data abstraction and analyses steps.

Other information extracted

LCS‐specific content

We extracted additional information from the final set of patient decision aids that was either relevant for the context of LCS or important in selecting an aid for use in clinical practice. This additional information included how incidental findings were presented, how radiation was presented, attention to tobacco cessation, importance of yearly screening, importance of being in good health, and willingness to receive curative treatment, as noted in the USPSTF recommendation. ⁵

Other features

Specific benefits and risks of LCS and how they were communicated (i.e., graphs, numbers, text) were also documented. Other features, such as supplemental videos, risk/benefit calculators, and pack‐year calculators, were also documented.

Stigma in patient decision aids

The study team used the Lung Cancer Stigma–Communications Assessment Tool to review decision aids for potentially stigmatizing and blaming language through language audits, context audits, context alternatives, and imagery audits. ¹⁴ We searched for words and phrases outlined in the framework (e.g., “smoker,” “nonsmoker,” “heavy smoker,” and “right steps”) and the use of certain imagery (smoke, vapors, diseased/dirty lungs, etc.) and color schemes. A context audit was performed by reviewing the intentions, targets, and values of the messages and creators of the decision aid.

Reading levels and time to administer/complete

The study team determined reading levels using the Flesch–Kincaid Grade Level formula. ¹⁵ We also estimated the amount of time it would take someone to read the decision aid by dividing the number of words by 238, the average number of words a person reads per minute. ¹⁶

Costs and insurance coverage

Attention to the costs of screening to the patient and insurance coverage was abstracted for the high quality aids.

RESULTS

Search and screening

The initial search strategies yielded 269,317 records, including 152,300 from the general web search and 82,380 from NCI‐designated cancer centers (Figure 1). Among these, 96 met our inclusion criteria, and 269,221 were excluded for lack of relevance to patients, failure to mention harms and/or benefits of LCS, duplication, unavailability at the time of data abstraction, or replacement by a newer version. Among the 96 educational materials, the majority were developed by NCI‐designated cancer centers (n = 44); followed by nonprofit organizations (n = 15), such as the GO2 Foundation and the ACS; government organizations (n = 9); and various other groups. Of the included records, 57 met the qualifying criteria to be considered patient decision aids. Figure 2 provides reasons for excluding 39 of the educational materials based on the IPDAS qualifying criteria. Materials were excluded for failing to meet more than one qualifying criterion. The majority were excluded for presenting information without framing it as a decision patients face (n = 31), lacking strategies to help patients clarify their values (n = 14), or not describing lung cancer (n = 11).

FIGURE 1.

Modified PRISMA flowchart. IPDAS indicates International Patient Decision Aid Standards; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta‐Analyses.

FIGURE 2.

Reasons tools failed to meet International Patient Decision Aid Standards‐qualifying criteria for decision aids.

Of the 57 patient decision aids that met IPDAS qualifying criteria, 10 also met the essential criteria for high‐quality patient decision aids, whereas 47 failed to meet these criteria and were excluded (see Figure S1). Most were excluded for failing to explicitly state the decision up front (n = 21) or for using outdated screening eligibility criteria (n = 19). Ten of the outdated decision aids would have met high‐quality decision aid standards if updated eligibility criteria had been used. Among the outdated decision aids, two had a fifth‐grade or sixth‐grade reading level, six were at a seventh‐grade to ninth‐grade reading level, and one was at a ninth‐grade reading level. Five of the outdated aids were estimated to take between 2 and 4 minutes to read, one took approximately 8 minutes, and one decision aid took approximately 10.5 minutes to review. One video decision aid was approximately 6 minutes in length. One decision aid included several subheading web pages and a video.

Characteristics of high‐quality decision aids

Ten patient decision aids met our essential criteria and are described in Table 2. ¹⁷ , ¹⁸ , ¹⁹ , ²⁰ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ Six were developed by academic medical or cancer centers, ¹⁸ , ¹⁹ , ²⁰ , ²¹ , ²⁴ , ²⁵ two were developed for veterans, ²² , ²³ one was by the point‐of‐care software company UpToDate, ²⁶ and one decision aid was developed by a nonprofit health information group and contracted for use on a cancer center website. ¹⁷ All decision aids were available online, four of which were interactive websites. ¹⁷ , ²³ , ²⁴ , ²⁵ The site “shouldiscreen.com” is available in Spanish and Chinese (both simplified and traditional). ²⁴ The Lung Cancer Screening Risk Calculator at ScreenLC.com, ²⁵ and “Annual Screening for Lung Cancer: Is it Right for Me?” ²² from the US Department of Veterans Affairs are also available in Spanish.

TABLE 2.

High‐quality lung cancer screening decision aids.

Patient decision aid and developer	Description	Year of last update	LCS guideline, policy	Pack‐year calculation guidance
a. Annual Screening for Lung Cancer: Is it Right for Me? (va.gov) US Department of Veterans Affairs (VA)	Downloadable pdf, 4 pages	2024	USPSTF 2021	Explanation of pack‐year, calculator
b. Is Lung Cancer Screening Right for You? The University of Chicago Medical Center	Video embedded within page on lung cancer screening; transcript available	2022	CMS 2022	Explanation of pack‐year
c. Is Lung Cancer Screening the Right Decision for You? US Department of Veterans Affairs (VA) a	Downloadable pdf	2019 b	USPSTF 2021 b	Explanation of pack‐year
d. Lung Cancer Screening Risk Calculator screenlc.com University of Utah School of Medicine Ann Arbor VA Center for Clinical Management Research University of Michigan Medical School	Interactive website for clinicians that includes a with patient decision aid that clinicians can print for their eligible patients; includes lung cancer risk calculator	Not given	USPSTF 2021	Calculator
e. Lung Cancer Screening: Is it Right for Me? Premier Health	Website with text information about eligibility, screening, benefits and harms, and insurance	2022	CMS 2022	Explanation of pack‐year
f. Lung Cancer Screening: Is it Right for Me? lungscreen.health The University of Texas MD Anderson Cancer Center	Video embedded in page; includes eligibility calculator and risk calculator	2022	USPSTF 2021	Calculator as separate feature
g. Lung Cancer: Should I Have Screening? Produced by Ignite Healthwise, LLC; accessed on University of Pittsburgh Medical Center website	Structured, interactive website with option to print summary	2022	USPSTF 2021	Explanation of pack‐year
h. Patient education: Lung cancer prevention and screening UpToDate	Website as part of UpToDate patient education offerings	2024	USPSTF 2021	Explanation of pack‐year
i. ShouldIScreen.com University of Michigan	Website with information about screening; calculators for determining pack years and lung cancer risk	2021	USPSTF 2021	Calculator
j. Yearly Lung Cancer Screening: Is it Right for Me? Siteman Cancer Center (Washington University)	Downloadable pdf, 2 pages, with information about benefits, drawbacks, and guidance on how to decide about screening	2021	USPSTF 2021	Explanation of pack‐year, links to another calculator

Patient decision aid and developer	Developer type	Target audience	Format (interactivity)	Language(s)
a. Annual Screening for Lung Cancer: Is it Right for Me? (va.gov) VA	US government	Veterans	PDF	English, Spanish c
b. Is Lung Cancer Screening Right for You? The University of Chicago Medical Center	Academic medical or cancer center	Eligible individuals	Video with transcript	English
c. Is Lung Cancer Screening the Right Decision for You? VA a	US government	Veterans	Web, interactive	English
d. Lung Cancer Screening Risk Calculator screenlc.com University of Utah School of Medicine; Ann Arbor VA Center for Clinical Management Research; University of Michigan Medical School	Academic medical or cancer center	Clinicians use risk calculator during a visit with patients	Web, interactive	English, Spanish
e. Lung Cancer Screening: Is it Right for Me? Premier Health	Academic medical or cancer center	People at high risk	Web	English
f. Lung Cancer Screening: Is it Right for Me? lungscreen.health The University of Texas MD Anderson Cancer Center	Academic medical or cancer center	Eligible individuals	Web and video	English d
g. Lung cancer: Should I have screening? Produced by Ignite Healthwise, LLC; accessed on University of Pittsburgh Medical Center website	Nonprofit health information group/academic medical center	People at high risk	Web, interactive	English
h. Patient education: Lung cancer prevention and screening UpToDate	Point‐of‐care software company	People at high risk	Web	English
i. ShouldIScreen.com University of Michigan	Academic medical or cancer center	Eligible individuals	Web, interactive	English, Spanish Traditional Chinese Simplified Chinese
j. Yearly lung cancer screening: Is it right for me? Siteman Cancer Center (Washington University)	Academic medical or cancer center	Individuals thinking about screening	PDF	English

Patient decision aid and developer	Additional features	Personalization (use of risk model/calculator)	Flesch–Kincaid reading level	Time to complete, minutes:seconds
a. Annual screening for lung cancer: Is it right for me? (va.gov) VA	Graphs, images, FAQs	No	6.9	10:18
b. Is Lung Cancer Screening Right for You? The University of Chicago Medical Center	Patient stories, screening locations, diverse images	No	10.8	2:12 video, 3:47 text
c. Is Lung Cancer Screening the Right Decision for You? VA a	Interactive tiles, printable	No	7.6	8:07
d. Lung Cancer Screening Risk Calculator screenlc.com University of Utah School of Medicine Ann Arbor VA Center for Clinical Management Research University of Michigan Medical School	CMS note template, graphs interactive harms and benefits scale, printable	Yes: Personalizes risk of lung cancer, mortality reduction as lives saved, and harms of screening (Ignite Healthwise, LLC 2024 17 ; Premier Health 2025 18 )	8.0	3:08
e. Lung Cancer Screening: Is it Right for Me? Premier Health	Patient education	No	8.5	3:40
f. Lung Cancer Screening: Is it Right for Me? lungscreen.health The University of Texas MD Anderson Cancer Center	Eligibility calculator, downloadable discussion guide	Yes: As separate feature, personalizes risk of lung cancer using PLCOm2012 model (Brysbaert 2019 16 )	6.7	3:15 video, 1:48 text
g. Lung Cancer: Should I Have Screening? Produced by Ignite Healthwise, LLC; accessed on University of Pittsburgh Medical Center website	FAQs, knowledge check, personal stories	No	5.9	13:59
h. Patient education: Lung cancer prevention and screening UpToDate	Patient education	No	11.4	5:18 text, 3:22 table
i. ShouldIScreen.com University of Michigan	Graphs, images, screening locations, development history, feedback survey	Yes: Personalizes risk of lung cancer and mortality reduction from screening (Brysbaert 2019 16 )	7.9	11:58
j. Yearly Lung Cancer Screening: Is it Right for Me? Siteman Cancer Center (Washington University)	Diverse images, CPT code for lung cancer screening	No	7.1	4:53

Abbreviations: CMS, Centers for Medicare and Medicaid; CPT, Current Procedural Terminology; FAQs, frequently asked questions; PDF, portable document format; USPSTF, US Preventive Services Task Force.

^a Available through NCI Evidence‐Based Cancer Control Programs.

^b Updated aid will use USPSTF 2021 eligibility criteria.

^c Spanish‐language version expected in January 2025.

^d Spanish‐language version in production.

The decision aids that met our quality criteria included additional features that enhanced the information provided. Features included a screening center locator or links to a locator; links to patient stories, graphs and images; diverse images of people of color; a CMS note template; the Current Procedural Terminology code for LCS with a CT scan; development history of the decision aid; and a feedback survey. Three decision aids also incorporated risk calculators. ²¹ , ²⁴ , ²⁵ Of those, two decision aids ²¹ , ²⁴ used the Tammemagi lung cancer risk prediction model, ²⁷ and one ²⁵ used the Lung Cancer Risk Assessment Tool, ²⁸ the Lung Cancer Death Risk Assessment Tool ²⁸ and the Life‐Years From Screening‐CT ²⁹ to make a recommendation about screening based on life‐years gained, lung cancer risk, and the number needed to screen to prevent one lung cancer death.

Reading level and time to administer varied widely among decision aids. Two decision aids had reading levels at or above 10th grade. ²⁰ , ²⁶ Five decision aids had grade reading levels between seventh and ninth grade, ¹⁸ , ¹⁹ , ²³ , ²⁴ , ²⁵ and three decision aids had reading levels between fifth and seventh grade. ¹⁷ , ²¹ , ²² Two decision aids took about 12–14 minutes to read, ¹⁷ , ²⁴ and two decision aids required approximately 3–4 minutes to read. ¹⁸ , ²⁵ One decision aid required approximately 10 minutes to read, ²² and one required approximately 8 minutes to read. ²³ Two decision aids included both video and text ²⁰ , ²¹ ; one included a 2:12 minute video and text that required approximately 4 minutes to read ²⁰ ; and one had a 3:15 video and 2 minutes of text. ²¹ In addition, one decision aid included a table that required approximately 3:30 minutes to read and text that took approximately 5 minutes to read. ²⁶

Essential criteria

Table S3 outlines how the high‐quality aids performed on certain IPDAS criteria. All of the high‐quality aids included negative and positive features of being screened or not being screened and described the next steps typically taken if the test detected the condition/problem. Nine of the aids described possible next steps based on screening results ¹⁷ , ¹⁸ , ¹⁹ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ ; all reported the date when it was published; six decision aids provided information on funding sources (three were located elsewhere) ¹⁷ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ ; all decision aids provided references to scientific evidence used (two provided references separately from the aid); two decision aids provided information about the update policy, ²⁴ , ²⁶ and, although the remaining eight aids did not provide update information, they did use updated (2021 or 2022) eligibility criteria or the developers indicated that an update was in process (the research team assumed the website was updated at the time of the current review). All decision aids described the next steps if the condition or problem was detected, whereas only three mentioned next steps if no problem was detected. ²² , ²³ , ²⁴ Nine decision aids had information about detection and treatment of cancer that would never have caused problems. ¹⁷ , ¹⁸ , ¹⁹ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ Seven high‐quality decision aids used an implicit‐values clarification approach (e.g., asks the user to think about what is important to them). ¹⁸ , ¹⁹ , ²⁰ , ²¹ , ²² , ²⁴ , ²⁶ Five high‐quality decision aids included explicit‐values clarification (e.g., prompting questions about how the patient feels about specific outcomes of screening). ¹⁷ , ²¹ , ²² , ²³ , ²⁵

Attention to benefits and harms of LCS

All but one aid emphasized lower lung cancer mortality resulting from screening, ¹⁷ , ¹⁹ , ²⁰ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ whereas four also mentioned that lung cancer is more treatable if found early (Table 3). ¹⁸ , ¹⁹ , ²² , ²⁴ Although benefits were predominately communicated by text, three decision aids included visual representations to demonstrate the reduction in lung cancer deaths as a result of screening. ¹⁷ , ²² , ²⁵ All 10 decision aids mentioned false‐positive results as harms of LCS. Nearly all decision aids (n = 9) mentioned overdiagnosis. ¹⁷ , ¹⁸ , ¹⁹ , ²⁰ , ²¹ , ²² , ²³ , ²⁴ , ²⁶ Potential harms related to LCS were mostly communicated by text; however, false‐positive results were communicated by additional graphs or numbers in four decision aids. ¹⁷ , ¹⁹ , ²⁴ , ²⁵ One decision aid communicated overdiagnosis using a graph. ¹⁷ Six aids mentioned costs of screening. ^{18 , 19 , 22} , ²³ , ^{24 , 26} The decision aids from Premier Health ¹⁸ and The University of Washington Siteman Cancer Center ¹⁹ emphasized contacting the patient's insurer about out‐of‐pocket costs. The site “Shouldiscreen.com” provided information about LCS coverage for various insurance plans, Medicare, and Medicaid. ²⁴

TABLE 3.

Attention to benefits and harms in high‐quality lung cancer screening decision aids.

Patient decision aid	Benefits			Benefit or harm
	Finding lung cancer early	Reduced deaths from lung cancer	Improved treatment outcomes	Incidental findings (e.g., heart disease) a
a. Annual Screening for Lung Cancer: Is it Right for Me? (va.gov) US Department of Veterans Affairs (VA)	Yes	Yes b	Yes	Yes, abnormalities in the lungs, heart, or other body parts unrelated to lung cancer
b. Is Lung Cancer Screening Right for You? The University of Chicago Medical Center	Yes	Yes	No	No
c. Is Lung Cancer Screening the Right Decision for You? VA	Yes	Yes	No	Yes, abnormality that is not in the lung (such as heart disease) or another type of lung disease
d. Lung Cancer Screening Risk Calculator screenlc.com University of Utah School of Medicine Ann Arbor VA Center for Clinical Management Research University of Michigan Medical School	Yes	Yes b	No	No
e. Lung Cancer Screening: Is it Right for Me? Premier Health	Yes	No	Yes	No
f. Lung Cancer Screening: Is it Right for Me? lungscreen.health The University of Texas MD Anderson Cancer Center	No	Yes	No	Yes, other health problems, like heart and lung disease
g. Lung Cancer: Should I Have Screening? Produced by Ignite Healthwise, LLC; accessed on University of Pittsburgh Medical Center website	No	Yes b	No	No
h. Patient education: Lung cancer prevention and screening UpToDate	Yes	Yes	No	No
i. ShouldIScreen.com University of Michigan	Yes	Yes	Yes	No
j. Yearly Lung Cancer Screening: Is it Right for Me? Siteman Cancer Center (Washington University)	Yes	Yes	Yes	Yes, something harmful other than lung cancer

Title (developer)	Harms
	False positives	False negatives	Over‐diagnosis	Anxiety	Radiation exposure	Diagnostic testing	Other harms
a. Annual Screening for Lung Cancer: Is it Right for Me? (va.gov) VA	Yes	No	Yes	Yes	Yes	Yes	Yes: Incidental findings, additional tests, procedures, and follow‐ups
b. Is Lung Cancer Screening Right for You? The University of Chicago Medical Center	Yes d	Yes	Yes	Yes d	No	No	Yes: Additional tests, procedures, and follow‐ups
c. Is Lung Cancer Screening the right Decision for You? VA	Yes	No	Yes	Yes	Yes	Yes	Yes: Additional tests, procedures, and follow‐ups require travel, or cost money or time
d. Lung Cancer Screening Risk Calculator screenlc.com University of Utah School of Medicine Ann Arbor VA Center for Clinical Management Research University of Michigan Medical School	Yes b , c	No	No	Yes	Yes	Yes	No
e. Lung Cancer Screening: Is it Right for Me? Premier Health	Yes	No	Yes	No	Yes	Yes	Yes: Additional tests, procedures, and follow‐ups; radiation‐caused cancer
f. Lung Cancer Screening: Is it Right for Me? lungscreen.health The University of Texas MD Anderson Cancer Center	Yes	No	Yes	No	Yes	No	No
g. Lung cancer: Should I have screening? Produced by Ignite Healthwise, LLC; accessed on University of Pittsburgh Medical Center website	Yes b , c	Yes	Yes b	No	Yes	Yes	Yes: Radiation‐caused cancer
h. Patient education: Lung cancer prevention and screening UpToDate	Yes	No	Yes	Yes	Yes	Yes	No
i. ShouldIScreen.com University of Michigan	Yes c	No	Yes	Yes	Yes	Yes	Yes: Costs of screening, diagnostic testing, and treatment
j. Yearly Lung Cancer Screening: Is it Right for Me? Siteman Cancer Center (Washington University)	Yes c	No	Yes	No	Yes	No	Yes: Incidental findings

Abbreviation: LCS, lung cancer screening.

^a Framed as a benefit or a harm.

^b Also displayed in graphical form.

^c Also described in numerical form.

^d Audio presentation.

Characteristics of aids unique to the context of LCS

Table S2 includes characteristics of the 10 high‐quality decision aids specific to the LCS context. The importance of tobacco cessation was included in all of the aids, and all but one emphasized the importance of yearly screening. ¹⁸ Four decision aids mentioned the need for patients to be in good health and the importance of discussing comorbidities with providers. ¹⁷ , ²⁰ , ²³ , ²⁶ Four decision aids described the importance of being willing to receive curative treatment if cancer were diagnosed. ¹⁷ , ²⁰ , ²³ , ²⁶

Use of stigmatizing language and images

Two of the high‐quality decision aids used person‐centered language throughout; that is, they avoided stigmatizing language. ¹⁹ , ²³ However, most high‐quality decision aids (n = 8) used the term “smoker” throughout the text. ¹⁷ , ¹⁸ , ²⁰ , ²¹ , ²² , ²⁴ , ²⁵ , ²⁶ It was often used to describe eligibility, such as “former smoker,” “current smoker,” or “never smoker.” In addition, five decision aids used the term “heavy” to describe the pattern of cigarette use. ¹⁷ , ¹⁸ , ²⁰ , ²⁵ , ²⁶ Four decision aids described quitting smoking as the “right steps.” ¹⁹ , ²⁰ , ²⁴ , ²⁵ Two decision aids included images of diseased lungs. ²⁰ , ²¹ Two decision aids used images of smoke and/or vapor and smoky or fiery color schemes. ²⁰ , ²⁴

DISCUSSION

This environmental scan identified several publicly available patient decision aids for LCS that met international quality standards from the IPDAS Collaboration in which developers had taken steps to minimize bias and potential harm to patients when developing these aids. Despite a requirement from CMS to use patient decision aids during a counseling and shared decision‐making visit, only 10 high‐quality aids were identified. This finding is consistent with inconsistencies observed in LCS program websites in general. ³⁰ Six of the aids were produced by academic medical or cancer centers, one was produced by a nonprofit organization, one was produced by UpToDate, and two were developed for military veterans.

Attention to the benefits and harms of LCS varied across the aids, and some were framed incorrectly. For instance, incidental findings were presented as a benefit of LCS despite the general lack of evidence supporting this claim specifically in LCS CT examination. ³¹ At least one common incidental finding has been extensively studied, coronary arterial calcification, indicating that higher amounts of calcium are associated with a higher incidence of major adverse cardiac events, similar to major trials of cardiovascular disease, such as the Framingham ³² , ³³ and MESA ³⁴ (Multi‐Ethnic Study of Atherosclerosis) studies, and cardiovascular risk‐reduction strategies are recommended for higher levels of calcium to reduce these events. ³⁵ Similarly, lower exposure to radiation from a low‐dose CT compared with a standard CT was inappropriately framed as a benefit in some aids. Many aids mentioned costs of screening, an important consideration often ignored in patient decision aids. ³⁶

Many high‐quality decision aids identified in this review were excluded because they used outdated eligibility criteria for LCS. Unfortunately, these outdated aids could mistakenly lead some individuals to forgo LCS and some clinicians to not recommend LCS by incorrectly assuming patients were not eligible. The IPDAS Collaboration recommends that an updating policy should accompany the release of all patient decision aids. ³⁷ An updating policy necessitates a commitment by the developer to monitor the literature and guidelines and to make timely changes. Developers need to specify the updating policy for their aids and identify resources to ensure the aids are current.

Several high‐quality decision aids included additional features not required by IPDAS, such as Current Procedural Terminology codes for LCS, patient stories, diverse images, a knowledge check quiz, graphs, links to screening locations, and values clarification worksheets. For example, the University of Pittsburgh Medical Center's web‐based decision aid includes a Likert scale for patients to indicate how important certain aspects of screening are to them, such as being screened every year, and a knowledge check quiz. The University of Pittsburgh Medical Center's decision aid also includes patient stories and quotes from those who have and have not been screened. The Siteman Cancer Center's decision aid included images of people of color. Varied approaches to helping clarify patients' values are appropriate because the IPDAS Collaboration does not favor any one specific approach. ⁹ Including these additional features, such as feedback from knowledge questionnaires, may improve decision making among patients. ³⁸

It is encouraging that several aids included risk calculators as features, given a call from the USPSTF for more research on the use of risk‐prediction models for LCS. ³⁹ The University of Michigan's decision aid (ShouldiScreen.com) and The University of Texas MD Anderson Cancer Center's decision aid both used a calculator based on the PLCOm2012 model. ⁴⁰ The University of Michigan/University of Utah (screenlc.com) decision aid used the National Cancer Institute's Lung Cancer Risk Assessment Tool. ²⁸ , ²⁹

However, it is concerning that stigmatizing language and images were found in the aids, including most of the high‐quality aids. Phrases or words like “smoker” have the potential to elicit feelings of guilt or shame because they equate a person with their smoking behavior. ¹⁴ , ⁴¹ , ⁴² Some aids also included images or settings like vapor and smoke. Future decision aids for LCS should take deliberate steps to avoid using stigmatizing or blaming language because it has the potential to cause individuals to avoid treatment or not seek out resources. ¹⁰ Additional IPDAS criteria that address stigmatizing language in patient decision aids could help provide guidance about this concern. The International Association for the Study of Lung Cancer has developed a language guide to provide guidance on avoiding stigmatizing language related to smoking and lung cancer and strongly encourages its adoption in scientific articles, presentations, and patient‐facing materials. ⁴³

There are several limitations to this environmental scan. Reviewing each educational product was not feasible, and we relied on keyword searches to eliminate many of these materials. It is possible that additional high‐quality decision aids were not identified. We limited our search to patient education materials that were in English and developed in the United States. Some English‐language patient educational materials were also available in other languages. Finally, we did not address implementation of the patient decision aids and do not have information about use of the aids.

CONCLUSIONS

Although the vast majority of publicly available patient educational materials about LCS are not patient decision aids, several high‐quality patient decision aids have been produced. Clinicians and patients can be confident in using the 10 high‐quality aids identified in this review to complement the process of shared decision making for LCS. The increasing availability of risk models for LCS suggests growing opportunities for integrating and evaluating personalized approaches to screening decisions.

AUTHOR CONTRIBUTIONS

Robert J. Volk: Conceptualization, investigation, funding acquisition, writing–original draft, methodology, validation, visualization, writing–review and editing, formal analysis, project administration, supervision, and resources. Jessica S. Lettieri: Investigation, writing–original draft, methodology, validation, project administration, writing–review and editing, formal analysis, and data curation. Viola B. Leal: Investigation, writing–original draft, writing–review and editing, formal analysis, and data curation. Gabrielle F. Duhon: Investigation, writing–original draft, methodology, validation, writing–review and editing, formal analysis, and data curation. Kristin G. Maki: Conceptualization, investigation, writing–review and editing, and methodology. M. Priscila Bernal Brietzke: Investigation, methodology, writing–review and editing, formal analysis, and project administration. Naomi Q. P. Tan: Investigation, methodology, writing–review and editing, and formal analysis. Elisa E. Douglas: Investigation, methodology, writing–review and editing, and formal analysis. Sarah Coles: Conceptualization, and writing–review and editing, and methodology. Mark H. Ebell: Conceptualization, methodology, and writing–review and editing. Maria C. Mejia: Conceptualization, writing–review and editing, and methodology. Ella A. Kazerooni: Writing–review and editing, conceptualization, and funding acquisition. Lauren Rosenthal: Funding acquisition, conceptualization, and writing–review and editing. Robert A. Smith: Conceptualization, funding acquisition, and writing review and editing.

CONFLICT OF INTEREST STATEMENT

Lauren S. Rosenthal and Robert A. Smith report that the American Cancer Society receives unrestricted educational funding by AbbVie, Amgen, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Daiichi‐Sankyo, Foundation Medicine, Genentech, Gilead, Guardant Health, Johnson & Johnson, Merck, Novartis, Novocure, Regeneron, Roche, Sanofi‐Genzyme, and Takeda in the form of sponsorships to support the American Cancer Society National Lung Cancer Roundtable. The remaining authors disclosed no conflicts of interest.

Supporting information

Figure S1

Table S1

Table S2

Table S3

Volk RJ, Lettieri JS, Leal VB, et al. The quality of patient decision aids for lung cancer screening: results from an environmental scan. Cancer. 2025;e70008. doi: 10.1002/cncr.70008

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.