Veteran and Lung Cancer Screening Coordinator Perspectives on Improving Adherence to Lung Cancer Screening

BackgroundLung cancer screening (LCS) with low-dose CT (LDCT) scan has been shown to reduce mortality from lung cancer, the deadliest cancer killer. More than one-half of incident lung cancers detected in the National Lung Screening Trial (NLST) were identified after the first year of screening, which highlights the importance of annual adherence to achieve mortality benefit from LCS. Although NLST adherence across three rounds of screening was 95%, adherence in the community is lower and highly variable even within the same health system.Research QuestionWhat are patient and LCS coordinator perspectives on barriers and potential solutions to ensuring adherence to annual LCS?Study Design and MethodsIn this qualitative study, we conducted six veteran focus groups of 21 veterans who had undergone at least one LCS examination and individual interviews of eight LCS coordinators. Interviews and focus groups were transcribed and coded using qualitative content analysis. Codes were sorted into categories reflecting veteran perceptions, LCS ideas, observations, barriers, facilitators, preferences, recommendations, and LCS program issues. These codes were then analyzed and used to identify themes influencing adherence.ResultsThe following four themes were identified from qualitative analysis: (1) direct communication about the repeat annual nature of screening was a driver for patient adherence, (2) patients recommended using other modalities including text messaging and mobile applications to improve adherence, (3) LCS coordinators reported a lack of emphasis and focus on adherence because of a lack of resources, and (4) the variability in program practices for bringing patients back every year and inability to measure adherence are barriers that need to be addressed.InterpretationDirect and multimodal communication may improve patient adherence to annual LCS, and system-level changes (eg, tracking dashboard and metrics) could assist LCS coordinators in addressing and focusing on LCS program adherence. Lung cancer screening (LCS) with low-dose CT (LDCT) scan has been shown to reduce mortality from lung cancer, the deadliest cancer killer. More than one-half of incident lung cancers detected in the National Lung Screening Trial (NLST) were identified after the first year of screening, which highlights the importance of annual adherence to achieve mortality benefit from LCS. Although NLST adherence across three rounds of screening was 95%, adherence in the community is lower and highly variable even within the same health system. What are patient and LCS coordinator perspectives on barriers and potential solutions to ensuring adherence to annual LCS? In this qualitative study, we conducted six veteran focus groups of 21 veterans who had undergone at least one LCS examination and individual interviews of eight LCS coordinators. Interviews and focus groups were transcribed and coded using qualitative content analysis. Codes were sorted into categories reflecting veteran perceptions, LCS ideas, observations, barriers, facilitators, preferences, recommendations, and LCS program issues. These codes were then analyzed and used to identify themes influencing adherence. The following four themes were identified from qualitative analysis: (1) direct communication about the repeat annual nature of screening was a driver for patient adherence, (2) patients recommended using other modalities including text messaging and mobile applications to improve adherence, (3) LCS coordinators reported a lack of emphasis and focus on adherence because of a lack of resources, and (4) the variability in program practices for bringing patients back every year and inability to measure adherence are barriers that need to be addressed. Direct and multimodal communication may improve patient adherence to annual LCS, and system-level changes (eg, tracking dashboard and metrics) could assist LCS coordinators in addressing and focusing on LCS program adherence. Take-home PointStudy Question: What are patient and lung cancer screening (LCS) coordinator perspectives on barriers and potential solutions to ensuring adherence to annual LCS?Results: The following four themes were identified: (1) direct communication about the repeat annual nature of screening was a driver for patient adherence, (2) patients recommended using other modalities including text messaging and mobile applications to improve adherence, (3) LCS coordinators reported a lack of emphasis and focus on adherence because of a lack of resources, and (4) the variability in program practices for bringing patients back every year and inability to measure adherence are barriers that need to be addressedInterpretation: Direct and multimodal communication may improve patient adherence to annual lung cancer screening, and system-level changes (eg, tracking dashboard and metrics) could assist LCS coordinators in addressing and focusing on LCS program adherence. Study Question: What are patient and lung cancer screening (LCS) coordinator perspectives on barriers and potential solutions to ensuring adherence to annual LCS? Results: The following four themes were identified: (1) direct communication about the repeat annual nature of screening was a driver for patient adherence, (2) patients recommended using other modalities including text messaging and mobile applications to improve adherence, (3) LCS coordinators reported a lack of emphasis and focus on adherence because of a lack of resources, and (4) the variability in program practices for bringing patients back every year and inability to measure adherence are barriers that need to be addressed Interpretation: Direct and multimodal communication may improve patient adherence to annual lung cancer screening, and system-level changes (eg, tracking dashboard and metrics) could assist LCS coordinators in addressing and focusing on LCS program adherence. Although the rate of lung cancer mortality continues to decline, it remains the leading cause of all cancer-related deaths in the United States, surpassing breast, prostate, and colorectal deaths combined.1Siegel R.L. Miller K.D. Fuchs H.E. Jemal A. Cancer statistics, 2022.CA Cancer J Clin. 2022; 72: 7-33Crossref PubMed Scopus (5247) Google Scholar Lung cancer screening (LCS) with low-dose CT (LDCT) scan detects earlier stage cancers leading to a reduction in lung cancer-related mortality based on the results of the National Lung Screening Trial (NLST) and Dutch Belgium Screening Trial (NELSON).2Aberle D.R. Adams A.M. Berg C.D. et al.Reduced lung-cancer mortality with low-dose computed tomographic screening.N Engl J Med. 2011; 365: 395-409Crossref PubMed Scopus (7464) Google Scholar,3de Koning H.J. van der Aalst C.M. de Jong P.A. et al.Reduced lung-cancer mortality with volume CT screening in a randomized trial.N Engl J Med. 2020; 382: 503-513Crossref PubMed Scopus (1458) Google Scholar There was 95% patient adherence to annual follow up in the NLST over a 3-year period, which is common in randomized trials with volunteers; however, this high level of patient adherence to follow up is not often achieved in community-based screening programs and was a mere 22.3% in the first million individuals screened in the United States.4Silvestri G.A. Goldman L. Burleson J. et al.Characteristics of persons screened for lung cancer in the United States: a cohort study.Ann Intern Med. 2022; 175: 1501-1505Crossref PubMed Scopus (9) Google Scholar Notably, more than one-half of incident lung cancers detected in the NLST were identified after the first year of screening.2Aberle D.R. Adams A.M. Berg C.D. et al.Reduced lung-cancer mortality with low-dose computed tomographic screening.N Engl J Med. 2011; 365: 395-409Crossref PubMed Scopus (7464) Google Scholar Support for annual adherence is further provided from the Dutch Belgium Screening Trial (NELSON) in which screening was conducted at increasing time intervals after baseline examination. Compared with the 1-year interval, the 2.5-year interval had a higher proportion of late-stage lung cancers (17.3% vs 6.8%, P = .02), and the number of lung cancers detected between screening examinations was higher.5Yousaf-Khan U. van der Aalst C. de Jong P.A. et al.Final screening round of the NELSON lung cancer screening trial: the effect of a 2.5-year screening interval.Thorax. 2017; 72: 48-56Crossref PubMed Scopus (197) Google Scholar Therefore, annual adherence to screening is a crucial aspect that should not be overlooked because both efficacy (ie, cancer detection rate, stage, mortality reduction) and cost-efficacy of screening are negatively impacted by patient nonadherence to follow up.6Han S.S. Erdogan S.A. Toumazis I. Leung A. Plevritis S.K. Evaluating the impact of varied compliance to lung cancer screening recommendations using a microsimulation model.Cancer Causes Control. 2017; 28: 947-958Crossref PubMed Scopus (34) Google Scholar, 7Mahadevia P.J. Fleisher L.A. Frick K.D. Eng J. Goodman S.N. Powe N.R. Lung cancer screening with helical computed tomography in older adult smokers: a decision and cost-effectiveness analysis.JAMA. 2003; 289: 313-322Crossref PubMed Scopus (294) Google Scholar, 8Black W.C. Gareen I.F. Soneji S.S. et al.Cost-effectiveness of CT screening in the National Lung Screening Trial.N Engl J Med. 2014; 371: 1793-1802Crossref PubMed Scopus (397) Google Scholar To assess feasibility of implementing LCS, the Veterans Health Administration conducted a demonstration project at eight sites across the United States.9Kinsinger L.S. Anderson C. Kim J. et al.Implementation of lung cancer screening in the Veterans Health Administration.JAMA Intern Med. 2017; 177: 399-406Crossref PubMed Scopus (251) Google Scholar Although the cancer detection rate after one round of screening across the eight centers was higher than the NLST, adherence was lower at 82% at year one and 65% at year two and varied greatly (51%-93%) among sites despite the same resources.10Tanner N.T. Brasher P.B. Wojciechowski B. et al.Screening adherence in the Veterans Administration lung cancer screening demonstration project.Chest. 2020; 158: 1742-1752Abstract Full Text Full Text PDF PubMed Scopus (29) Google Scholar Further analysis of individuals screened at the Veterans Health Administration found an overall adherence of 50%.11Nunez E.R. Caverly T.J. Zhang S. et al.Adherence to follow-up testing recommendations in US veterans screened for lung cancer, 2015-2019.JAMA Netw Open. 2021; 4e2116233Crossref PubMed Scopus (33) Google Scholar Given the necessity of high levels of LCS adherence to optimize screening quality, we sought to better understand barriers and facilitators of adherence in those receiving and delivering care at the Veterans Health Administration. To characterize the primary factors influencing veteran adherence to annual LCS, we drew on conventional qualitative content analysis. This qualitative research methodology uses the concept of describing a particular phenomenon when existing theory or literature is limited.12Hsieh H.F. Shannon S.E. Three approaches to qualitative content analysis.Qual Health Res. 2005; 15: 1277-1288Crossref PubMed Scopus (24084) Google Scholar Content analysis was chosen because this approach allows categories and themes to develop from data as opposed to using preconceived groupings, which permits direct evaluation of information from study participants. This qualitative study focused on both veteran and LCS coordinator perceptions of LCS adherence at various screening sites. We used a structured questionnaire to explore veteran experiences with LCS (e-Appendix 1) and encouraged moderated focus group discussion to explore facilitators and barriers to LCS adherence. Focus groups and telephone interviews were conducted between August 2019 and January 2020. A total of six focus group discussions were led by experienced personnel using open-ended questions based on standard principles of qualitative interviewing.13Seidman I. Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences.5th ed. Teacher’s College Press, 2019Google Scholar Interviews were recorded, transcribed verbatim removing any identifiers, and analyzed using conventional qualitative content analysis. When approaching LCS coordinator perceptions, we conducted eight telephone interviews using a structured questionnaire (e-Appendix 1). Medical University of South Carolina Office of Research Integrity Institutional Review Board approval was obtained from the Medical University of South Carolina (Pro No. 91456). A convenience sample of patients meeting US Preventive Services Task Force eligibility criteria for LCS who had undergone at least one LCS examination in the past at the Ralph H. Johnson Veterans Affairs (VA) Healthcare System (Charleston, SC) were invited to participate in the study by letter and telephone and were offered $100 compensation for participation. Twenty-one veterans agreed to participate across six focus groups, meeting the number of participants considered to achieve qualitative study thematic saturation based on previous experience.14Saunders B. Sim J. Kingstone T. et al.Saturation in qualitative research: exploring its conceptualization and operationalization.Qual Quant. 2018; 52: 1893-1907Crossref PubMed Scopus (4325) Google Scholar Additionally, saturation at this sample size conforms to recommendations for a focused objective (veteran perceptions of LCS), a relatively homogenous population (veterans who had LCS), and data adequacy (ability to provide an account that represents their experience)15Hennink M. Kaiser B.N. Sample sizes for saturation in qualitative research: a systematic review of empirical tests.Soc Sci Med. 2022; 292114523Crossref PubMed Scopus (523) Google Scholar that justifies such a sample size. VA sites conducting LCS with the use of dedicated coordinators were contacted by email and eight LCS coordinators from different facilities agreed to participate in telephone interviews. LCS coordinator roles in the screening process include verifying patient eligibility for screening, conducting personalized shared decision-making visits regarding LCS, relaying results to patients and primary care providers, initiating workup for screen-detected findings, and contacting/scheduling return imaging examinations. LCS coordinators included those who had participated in the LCSDP and others who started screening after the demonstration project, to obtain feedback regarding implementation of screening and adherence. Members of the research team reviewed both focus group and telephone interview transcripts. Subsequently, two members (J. A. and C. P.) jointly coded the transcripts for qualitative content analysis. After immersion in the transcriptions, codes were assigned to portions of the text and compared between coders for consensus, consistent with data-driven coding.16Schreier M. Qualitative Content Analysis in Practice. Sage Publications, 2012Google Scholar Codes were then grouped into categories and examined for relationships and themes related to the original question of facilitators and barriers to adherence for summary conclusions. Veteran FG and LCS coordinator interviews revealed a broad range of responses; however, several clear themes emerged after qualitative content analysis from both veteran and coordinator perspectives. Table 1 presents a sampling of representative quotes.Table 1Emerging Themes and Representative Quotes From Veterans and LCS CoordinatorsThemesRepresentative QuotesVeterans Direct communication importance of annual scan“The [veterans] need to know it is a recurring thing.” Personalized messaging“We get text messages for our appointments and if not those we get emails, why not use MyHealtheVet?” Facilitator: ease of testing“Even if I have no change on the second one, I will still come back the following year because it is painless, fast, and easy.” Barrier: fear of test results“It is not a fear of the scans, it is a fear of the results…I think it is probably a major barrier.”LCS coordinators Lack of resources to ensure adherence•“I would like to be able to send some sort of reminder out to people and say, hey, you are due for your annual scan…I would need people for that kind of thing. I need a lot of help.”•“That constant reinforcement is what promotes compliance…The issue comes to is as it grows, do we have the proper support for it.”•“I am about 6 weeks behind in initial consults just from the sheer amount of work that I have right now. You know, one person trying to do all of this. It just compounds because the more people you enroll, the more scans.” Need for uniform tracking system•“…One of the key things to improving adherence is one of the things I found most frustrating when I started this program…we have to have a consolidated [process]…They all try to use different tracking systems and it just makes it much harder and much more complicated.”•“I think it [adherence] is useful, but it is hard to know. I think the reason why people don’t know it is because it’s a hard thing to measure. It sounds like it should be really simple, but it’s not.”LCS = lung cancer screening. Open table in a new tab LCS = lung cancer screening. The first, and most impactful, theme from veteran discussion was how clear communication is critical to the process of adherence. A subcategory within the theme of communication that emerged was the importance of repetitive emphasis on LCS as a recurrent event. There was large variation in what veterans remembered regarding the follow-up process, despite standardization of the screening process at the VA. Some recalled that they had specifically been told that screening was a recurrent test and that it was important to return, whereas for others the process was much less clear. Many patients were confused about the time line of screening, with some unclear of the frequency (eg, “I was told to come back every 3 years, and this is what I have done”), and others who simply thought this was a negotiable time line (eg, “I was given the option whether to come back”). Veterans widely agreed that more emphasis should be placed on this as a recurring process (eg, “They need to know it is a recurring thing”). The second theme that emerged from the patient perspective was the need to use other modalities to reach patients more effectively throughout the screening process. Many agreed that the use of other processes including text messaging, My HealtheVet (an interactive application that allows veterans to schedule appointments online, refill prescriptions, view health records, and send messages to providers), and personalized letters to notify patients as the time for annual screening draws near could improve return rates. One patient stated the following: “We get text messages for our appointments and if not those we get emails, why not use My HealtheVet?” Personalized letters could potentially help veterans differentiate an action item from less important mail from the Veterans Health Administration. One participant noted how mail fatigue frequently leads to inaction on the part of veterans: “I know there is a lot of literature being put out there. I get stuff from the VA all the time. 90% of it goes in the trash can.” Other factors discussed ranged from internal motivations to logistics of the screening process that were thought to contribute to adherence; however, a third theme emerged, revealing that fear was potentially impacting veteran’s perception on the screening process: “It is not a fear of the scans, it is a fear of the results.” This factor in adherence ties into the first theme identified, indicating that better communication regarding the management of pulmonary nodules could help alleviate this barrier to follow up. An improved understanding that early stage lung cancer is potentially curable might contribute to motivation for return for annual screening. An additional theme addressed the facilitators that veterans cited that supported their LCS choice. Knowledge of their risk status was cited frequently by veterans (eg, “Yes, I was screened last year. I believe it is a good idea because I am a long-term smoker”). Similarly, a history of a previous nodule or family history of cancer appeared as additional motivators. The speed and ease of the procedure was also seen as a facilitator. One participant stated, “There is really nothing to it. It was over before I really got used to being in there. It was so fast.” Veterans living close to the facility cited proximity as a facilitator to coming in for LCS and noted that wait times for the radiology department were short compared with waiting room time spent for primary care provider clinics. Veterans cited fewer barriers to LCS. Family priorities sometimes played a role (eg,“I had a really hard time getting down here last year because my sister was in and out of the hospital so much”). The target of the screening produced a more personal reaction as a potential barrier (eg, “It is not a fear of the scans, it is a fear of the results…I think it is probably a major barrier”). The focused key informant interviews with LCS coordinators revealed barriers to adherence at the system level was the most striking factor affecting sites. The first theme identified from coordinator discussion was adherence tracking. One coordinator responded: “I have no idea what our adherence is, I guess that would be nice to know.” Another coordinator echoes lack of knowledge, but also a false sense of security, regarding their site’s performance: “I guess I don’t know our adherence numbers. I feel they are good, but I don’t have anything to back that up.” When probed further on the question of adherence, some coordinators recognized the importance of retention: “It is embarrassing when someone asks you about your adherence rate and I don’t know. How can I have a quality program if I don’t know how many people are coming back? What if I am just one-time screening everybody? How horrible is that? I know that is bad.” Some coordinators were less concerned with adherence tracking: “I have no plans for tracking adherence currently.” Instead, most focused on veterans who had higher risk nodules at baseline screening. Many coordinators did note that if they had the resources to focus on annual screenings, they would focus more efforts in this area. The second notable theme identified from the coordinators was lack of site standardization in how patients are brought back for annual screening. Some sites only send letters, others call veterans, and still others rely on primary care providers to identify who is due for annual screening. One coordinator stated, “I have to rely on PCPs [primary care providers] to let me know when someone is due for an annual screen.” This reliance on primary care provider involvement within the screening process directly stemmed from a lack of resources: “I am about six weeks behind in initial consults just from the sheer amount of work that I have…I simply don’t have the resources to manage alone.” Several coordinators acknowledged that primary care provider involvement has created confusion in the process: “We thought about withdrawing the [LDCT scan] order to just myself…” But again, lack of site resources directly affected their capability to improve the process: “…except for I have no coverage. I don’t have the resources at all” (referring to order entry and patient follow-up calls). Adherence is critically important to achieve the highest mortality reduction from LCS; however, rates are much lower than that seen in clinical trials. This study, which is the first to explore both patient and LCS coordinator perspectives, adds to a growing body of literature on obstacles and potential solutions to improving adherence and has several important findings. First, clear and repeated personalized communication with those undergoing LCS using various platforms for communication delivery may be the most effective way to ensure adherence. Second, in health systems broadly implementing LCS in a centralized, decentralized, or hybrid design, education of the importance of adherence at the provider and coordinator level is necessary. Finally, system-level interventions are needed that allow programs to easily track adherence rates and provide metrics for quality and improvement. The most prominent finding from analysis of veteran discussion is how clear communication could lead to higher rates of adherence. Confusion was frequently reported on the time line of the screening process, including when to return and why. These themes are in line with a survey study that found 47% of respondents incorrectly identified their LCS follow-up recommendation.17Triplette M. Wenger D.S. Shahrir S. et al.Patient identification of lung cancer screening follow-up recommendations and the association with adherence.Ann Am Thorac Soc. 2022; 19: 799-806Crossref PubMed Scopus (6) Google Scholar The focus group expressed the importance of increasing repetition and utilization of unique modes of communication (eg, text messaging, My HealtheVet, personalized correspondence) as a way of overcoming this barrier. This theme echoes that of a study conducted in nonveterans undergoing screening in which participants indicated that reminders are an important facilitator of annual screening.18Holman A. Kross E. Crothers K. Cole A. Wernli K. Triplette M. Patient perspectives on longitudinal adherence to lung cancer screening.Chest. 2022; 162: 230-241Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar Personalized communication through an automated telephone reminder is an example of interventions that have shown to be successful in increasing repeat mammography adherence by 18%.19DeFrank J.T. Rimer B.K. Gierisch J.M. Bowling J.M. Farrell D. Skinner C.S. Impact of mailed and automated telephone reminders on receipt of repeat mammograms: a randomized controlled trial.Am J Prev Med. 2009; 36: 459-467Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar A comparative effectiveness study of a multifaceted intervention to improve adherence to colorectal cancer screening in community health centers showed that mailed reminder letters, text messaging, and personalized phone calls increased adherence by 45%.20Baker D.W. Brown T. Buchanan D.R. et al.Comparative effectiveness of a multifaceted intervention to improve adherence to annual colorectal cancer screening in community health centers: a randomized clinical trial.JAMA Intern Med. 2014; 174: 1235-1241Crossref PubMed Scopus (154) Google Scholar Enhancing communication around the LCS process would also logically ameliorate the theme of fear surrounding the LCS process by helping veterans better understand the purpose of early lung cancer diagnosis. Notably, this cohort of patients had already undergone at least one baseline LCS examination, and this study could not address reasons for lack of uptake in those eligible but not yet screened. Data from LCS coordinator interviews revealed widespread deficiencies in knowledge of adherence rates, adherence tracking, and in some instances a lack of general understanding regarding the importance of this metric. The ability to track and have real-time data on LCS adherence is fundamental to the screening process because this determines what changes are necessary to improve adherence rates. Harnessing the power of the electronic medical record, particularly around data captured by date and results of screening examinations, should be uniformly collected, reviewed, and acted on in a timely manner. The second important conclusion identified from coordinator discussions was the general absence of screening site standardization. This lack of standardization was most notable by primary care provider integration into VA site screening protocols at many sites, despite evidence indicating that primary care provider-managed lung screening results in significantly lower adherence.21Smith H.B. Ward R. Frazier C. Angotti J. Tanner N.T. Guideline-recommended lung cancer screening adherence is superior with a centralized approach.Chest. 2022; 161: 818-825Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar The size of patient census within screening programs and active growth was frequently seen as overwhelming for the LCS coordinators, and although many recognized that primary care provider involvement was not a reliable mechanism to ensure adherence, they were unable to perform all the necessary tasks to assure screening quality on their own. Adherence to annual screening is essential to achieve a mortality reduction from lung cancer and should be considered a quality metric for high-quality lung screening programs; however, the real-world experience has demonstrated suboptimal levels. Both patients and LCS coordinators have identified barriers and areas for change at the system, coordinator, and patient level to improve adherence. Efforts to implement multilevel interventions are needed to promote adherence, ensure high-quality screening, and ultimately improve lung cancer outcomes. The authors have reported to CHEST that no funding was received for this study.