A Multistakeholder Qualitative Study to Inform Sexual Orientation and Gender Identity Data Collection in the Cancer Care Setting.

Purpose: Sexual and gender minoritized (SGM) populations face health disparities along the cancer care continuum, although attempts to define these disparities are limited by a lack of comprehensive sexual orientation and gender identity (SOGI) data collection. The objective of this study was to interview a diverse group of stakeholders to understand attitudes, barriers, and facilitators to inform data collection approaches in a cancer care setting. Methods: This was a qualitative study conducted from March to July 2023 with paired surveys of stakeholders including patients, caregivers, providers, and cancer registry staff. Twenty participants across these categories, including half who identified as SGM, completed surveys and interviews. Qualitative data were reduced to themes with exemplar quotations using rapid qualitative analysis methods and compared to survey data. Results: Themes revealed general support for SOGI data collection as part of holistic cancer care, and all participants acknowledged that specific SOGI-related information, particularly correct pronoun usage, was essential to inform patient-centered care. Themes revealed tensions around optimal SOGI data collection methods, mixed opinions on the relevance of sexual orientation, experiences of discrimination and discomfort related to SOGI, and limited acknowledgment of population benefits of SOGI data collection. Conclusion: Themes demonstrated overall support for SOGI data collection but also revealed several barriers, such as a lack of recognition of population benefits and experiences of discrimination and discomfort, that will need to be addressed to comprehensively collect these data. Based on diverse preferences and limitations of all methods of collection, a multimodal approach may be needed to optimize completion.

Understanding determinants of lung cancer preventive care in at-risk urban American Indians and Alaska Natives: A mixed-methods study.

Introduction: Lung cancer is the leading cause of cancer death among American Indian and Alaska Native (AI/AN) people, and AI/AN people have the highest rate of smoking of any racial or ethnic group in the US. There is limited research to inform culturally-relevant strategies for lung cancer prevention inclusive of lung cancer screening (LCS). The objective of this study was to understand determinants of LCS and tobacco cessation care in at-risk urban-dwelling AI/ANs. Materials and Methods: This was a mixed-methods community-based participatory research study including complimentary qualitative discussions and surveys conducted in Seattle, Washington, USA from 2022 to 2023. The study measures and analytic approach integrated the Consolidated Framework for Implementation Research and Tribal Critical Race Theory and qualitative transcripts were analyzed using thematic analysis. Participants were self-identified AI/AN people who were age ≥ 40 and had ≥ 10-year history of commercial cigarette smoking. Results: Forty-five participants completed surveys and participated in discussions, 48% were female, the median age was 58 and median smoking history was 24 pack-years of commercial cigarette use. Themes revealed prominent barriers to LCS care including access, costs, awareness, and fear. Many reported previous negative and discriminatory encounters within and outside the health system which may also serve as barriers. Most participants endorsed cancer screening and increased education, recommending Indigenous-centered, delivered, and tailored programs, as well barrier-directed support. Conclusions: In a broad sample of at-risk urban-dwelling AI/AN people, our findings suggest enthusiasm for preventive care but several complex barriers. Participants endorsed culturally-tailored programs which could provide relevant education and address barriers.

A tailored decision aid improves understanding of lung cancer screening in people with HIV.

BACKGROUND: People with HIV are at increased risk for lung cancer and multimorbidity, complicating the balance of risks and benefits of lung cancer screening. We previously adapted Decision Precision (screenlc.com) to guide shared decision-making for lung cancer screening in people with HIV. RESEARCH QUESTION: Does an HIV-adapted and personally tailored decision aid improve shared decision-making regarding lung cancer screening in people with HIV as measured by knowledge, decisional conflict, and acceptability? STUDY DESIGN AND METHODS: This was a single-arm pilot trial of the decision aid in 40 participants with HIV eligible for lung cancer screening. The decision aid included personalized screening recommendations and HIV-specific, five-year risk estimates of lung cancer and all-cause mortality. Participants reviewed the decision aid at shared decision-making visits and completed pre- and post-visit surveys with measures of knowledge about lung cancer screening, acceptability, and decisional conflict. RESULTS: The 40 enrolled participants were a median 62 years old and 60% were currently smoking with median five-year risks of lung cancer and all-cause mortality of 2.0% (IQR 1.4-3.3%) and 4.1% (IQR 3.3-7.9%). Personalized recommendations included "Encourage Screening" for 53% of participants and "Preference Sensitive" recommendations for the remainder. Participants showed improvement in two validated knowledge measures with relative improvement of 60% (p<0.001) on the LCS-12 and 27% (p<0.001) on the LKS-7, with significant improvement on questions regarding false-positive and false-negative findings, incidental findings, lung cancer-specific mortality benefit, and the possible harms of screening. Participants reported low scores on the decisional conflict scale (median score 0, IQR 0-5) and high acceptability. Ninety percent ultimately underwent screening within one month of the visit. INTERPRETATION: This HIV-adapted and personally tailored decision aid improved participants' knowledge of risks, benefits, and characteristics of screening with low decisional conflict and high acceptability. This decision aid can enable high-quality shared decision-making in this high-risk population.

An alternating-intervention pilot trial on the impact of an informational handout on patient-reported outcomes and follow-up after lung cancer screening.

INTRODUCTION: Lung cancer screening (LCS) can reduce lung cancer mortality; however, poor understanding of results may impact patient experience and follow-up. We sought to determine whether an informational handout accompanying LCS results can improve patient-reported outcomes and adherence to follow-up. STUDY DESIGN: This was a prospective alternating intervention pilot trial of a handout to accompany LCS results delivery. SETTING/PARTICIPANTS: Patients undergoing LCS in a multisite program over a 6-month period received a mailing containing either: 1) a standardized form letter of LCS results (control) or 2) the LCS results letter and the handout (intervention). INTERVENTION: A two-sided informational handout on commonly asked questions after LCS created through iterative mixed-methods evaluation with both LCS patients and providers. OUTCOME MEASURES: The primary outcomes of 1)patient understanding of LCS results, 2)correct identification of next steps in screening, and 3)patient distress were measured through survey. Adherence to recommended follow-up after LCS was determined through chart review. Outcomes were compared between the intervention and control group using generalized estimating equations. RESULTS: 389 patients were eligible and enrolled with survey responses from 230 participants (59% response rate). We found no differences in understanding of results, identification of next steps in follow-up or distress but did find higher levels of knowledge and understanding on questions assessing individual components of LCS in the intervention group. Follow-up adherence was overall similar between the two arms, though was higher in the intervention group among those with positive findings (p = 0.007). CONCLUSIONS: There were no differences in self-reported outcomes between the groups or overall follow-up adherence. Those receiving the intervention did report greater understanding and knowledge of key LCS components, and those with positive results had a higher rate of follow-up. This may represent a feasible component of a multi-level intervention to address knowledge and follow-up for LCS. TRIAL REGISTRATION: ClinicalTrials.gov NCT05265897.

A pragmatic randomized clinical trial of multilevel interventions to improve adherence to lung cancer screening (The Larch Study): Study protocol.

BACKGROUND: In real-world settings, low adherence to lung cancer screening (LCS) diminishes population-level benefits of reducing lung cancer mortality. We describe the Larch Study protocol, which tests the effectiveness of two patient-centered interventions (Patient Voices Video and Stepped Reminders) designed to address barriers and improve annual LCS adherence. METHODS: The Larch Study is a pragmatic randomized clinical trial conducted within Kaiser Permanente Washington. Eligible patients (target n = 1606) are aged 50-78 years with an index low-dose CT (LDCT) of the chest with negative or benign findings. With a 2 × 2 factorial-design, patients are individually randomized to 1 of 4 arms: video only, reminders only, both video and reminders, or usual care. The Patient Voices video addresses patient education needs by normalizing LCS, reminding patients when LCS is due, and encouraging social support. Stepped Reminders prompts primary care physicians to order patient's repeat screening LDCT and patients to schedule their scan. Intervention delivery is embedded within routine healthcare, facilitated by shared electronic health record components. Primary outcome is adherence to national LCS clinical guidelines, defined as repeat LDCT within 9-15 months. Patient-reported outcomes are measured via survey (knowledge of LCS, perception of stigma) approximately 8 weeks after index LDCT. Our mixed-methods formative evaluation includes process data, collected during the trial, and interviews with trial participants and stakeholders. DISCUSSION: Results will fill an important scientific gap on multilevel interventions to increase annual LCS adherence and provide opportunities for spread and scale to other healthcare settings. REGISTRATION: Trial is registered at clinicaltrials.gov (#NCT05747443).

Factors associated with lung cancer risk factor documentation.

Objectives: To identify factors associated with the minimum necessary information to determine an individual's eligibility for lung cancer screening (ie, sufficient risk factor documentation) and to characterize clinic-level variability in documentation. Study Design: Cross-sectional observational study using electronic health record data from an academic health system in 2019. Methods: We calculated the relative risk of sufficient lung cancer risk factor documentation by patient-, provider-, and system-level variables using Poisson regression models, clustering by clinic. We compared unadjusted, risk-adjusted, and reliability-adjusted proportions of patients with sufficient smoking documentation across 31 clinics using logistic regression models and 2-level hierarchical logit models to estimate reliability-adjusted proportions across clinics. Results: Among 20,632 individuals, 60% had sufficient risk factor documentation to determine screening eligibility. Patient-level factors inversely associated with risk factor documentation included Black race (relative risk [RR], 0.70; 95% CI, 0.60-0.81), non-English preferred language (RR, 0.60; 95% CI, 0.49-0.74), Medicaid insurance (RR, 0.64; 95% CI, 0.57-0.71), and nonactivated patient portal (RR, 0.85; 95% CI, 0.80-0.90). Documentation varied across clinics. The reliability-adjusted intraclass correlation coefficient decreased from 11.0% (95% CI, 6.9%-17.1%) to 5.3% (95% CI, 3.2%-8.6%), adjusting for covariates. Conclusions: We found a low rate of sufficient lung cancer risk factor documentation and associations of risk factor documentation based on patient-level factors such as race, insurance status, language, and patient portal activation. Risk factor documentation rates varied across clinics, and only approximately half the variation was explained by factors in our analysis.

Lung Cancer Screening in People With HIV: A Mixed-Methods Study of Patient and Provider Perspectives.

INTRODUCTION: People with HIV are at higher risk of lung cancer; however, there is limited research on attitudes, barriers, and facilitators to lung cancer screening in people with HIV. The objective of this study was to understand the perspectives on lung cancer screening among people with HIV and their providers. METHODS: Surveys of people with HIV and HIV-care providers were complemented by qualitative focus groups and interviews designed to understand the determinants of lung cancer screening in people with HIV. Participants were recruited through an academic HIV clinic in Seattle, WA. Qualitative guides were developed by integrating the Consolidated Framework for Implementation Research and the Tailored Implementation of Chronic Diseases checklist. Themes that emerged from thematic analyses of qualitative data were compared with surveys in joint displays. All study components were conducted between 2021 and 2022. RESULTS: Sixty-four people with HIV completed surveys, and 43 participated in focus groups. Eleven providers completed surveys, and 10 were interviewed for the study. Themes from joint displays show overall enthusiasm for lung cancer screening among people with HIV and their providers, particularly with a tailored and evidence-based approach. Facilitators in this population may include longstanding engagement with providers and health systems and an emphasis on survivorship through preventive healthcare interventions. People with HIV may also face barriers acknowledged by providers, including a high level of medical comorbidities and competing issues such as substance abuse, mental health concerns, and economic instability. CONCLUSIONS: This study reveals that people with HIV and their providers have overall enthusiasm toward screening. However, tailored interventions may be needed to overcome specific barriers, including complex decision making in the setting of medical comorbidity and patient competing issues.

Smoking Cessation, Version 3.2022, NCCN Clinical Practice Guidelines in Oncology.

Although the harmful effects of smoking after a cancer diagnosis have been clearly demonstrated, many patients continue to smoke cigarettes during treatment and beyond. The NCCN Guidelines for Smoking Cessation emphasize the importance of smoking cessation in all patients with cancer and seek to establish evidence-based recommendations tailored to the unique needs and concerns of patients with cancer. The recommendations contained herein describe interventions for cessation of all combustible tobacco products (eg, cigarettes, cigars, hookah), including smokeless tobacco products. However, recommendations are based on studies of cigarette smoking. The NCCN Smoking Cessation Panel recommends that treatment plans for all patients with cancer who smoke include the following 3 tenets that should be done concurrently: (1) evidence-based motivational strategies and behavior therapy (counseling), which can be brief; (2) evidence-based pharmacotherapy; and (3) close follow-up with retreatment as needed.

Delays in Recommended Follow-Up after Positive Findings in Lung Cancer Screening.

Rationale: Lung cancer screening (LCS) is an effective tool to reduce mortality. However, barriers along the LCS care continuum, including delay in follow-up care, may reduce effectiveness. Objectives: The primary goals of this study were to evaluate delays in follow-up in patients with positive findings on LCS and to examine the impact of delay on lung cancer staging. Methods: This was a retrospective cohort study of patients enrolled in a multisite LCS program with positive LCS findings, defined as Lung Computed Tomography Screening Reporting and Data System (Lung-RADS) 3, 4A, 4B, or 4X. Time to first follow-up was evaluated with delay considered >30 days beyond the standardized Lung-RADS recommendation. Multivariable Cox models were used to evaluate the likelihood of delay by Lung-RADS category. Participants with resultant non-small cell lung cancer were evaluated to determine if delay in follow-up was associated with clinical upstaging. Results: Three hundred sixty-nine patients with 434 examinations had positive findings; 16% of findings were ultimately diagnosed as lung cancer. In 47% of positive examinations, there was a delay in follow-up (median delay, 104 d), representing 59% (210 d) of Lung-RADS 3 examinations, 35% (64 d) of Lung-RADS 4A examinations, and 40% (34 d) of Lung-RADS 4B/4X examinations (P < 0.001). In the 54 patients diagnosed with non-small cell lung cancer through LCS, delay was associated with increased likelihood of clinical upstaging (P < 0.001). Conclusions: In this study of delay in follow-up after positive LCS findings, we found that nearly half of patients had delays in follow-up and that delay was associated with clinical upstaging in patients whose positive findings represented lung cancer. Further targeted interventions to ensure timely follow-up after positive LCS examination are critical.

Patient and Clinician Recommendations to Improve Communication and Understanding of Lung Cancer Screening Results.

BACKGROUND: Patient understanding of chest low-dose CT (LDCT) scan results for lung cancer screening (LCS) may impact outcomes. RESEARCH QUESTION: What are patient- and clinician-identified gaps in understanding and communication of LCS results and how might communication be improved through a patient-oriented tool? STUDY DESIGN AND METHODS: We performed a mixed-methods study of participants recruited from a multisite LCS program to understand knowledge gaps after receiving LCS results and to guide development of a commonly asked questions (CAQ) after LCS information sheet. Initial patient surveys assessed understanding and reactions to LCS results (n = 190). We then conducted patient interviews and focus group discussions (n = 31) to understand experiences receiving LDCT scan results and reactions to results letters and the proposed CAQ; we also interviewed clinicians (n = 6) for feedback on these resources. We summarized survey responses and used thematic analysis to identify major themes in focus groups and interviews. RESULTS: Of 190 survey respondents (43% response rate), although 88% agreed that they "understood" their LCS results, only 55% reported understanding what a lung nodule is. Approximately two-thirds thought it was "very important" to receive more information regarding lung nodules and incidental lung and heart disease. In interviews and focus groups, although patients believed that brief results letters for normal LDCT scan results generally were acceptable, most found letters explaining abnormal LDCT scan and incidental findings to be concerning and not a substitute for discussion with their clinician. Nearly all patients expressed that the CAQ sheet provided helpful information on nodules, results reporting and incidental findings, and helped them form questions to ask their clinicians. INTERPRETATION: We identified patient-reported information needs regarding LCS results and developed a CAQ information sheet that was refined with patient and clinician input. The CAQ may represent a simple and feasible way to improve LCS results reporting and to augment clinician-patient discussions.

Comorbidity and life expectancy in shared decision making for lung cancer screening.

Shared decision making (SDM) is an important part of lung cancer screening (LCS) that includes discussing the risks and benefits of screening, potential outcomes, patient eligibility and willingness to participate, tobacco cessation, and tailoring a strategy to an individual patient. More than other cancer screening tests, eligibility for LCS is nuanced, incorporating the patient's age as well as tobacco use history and overall health status. Since comorbidities and multimorbidity (ie, 2 or more comorbidities) impact the risks and benefits of LCS, these topics are a fundamental part of decision-making. However, there is currently little evidence available to guide clinicians in addressing comorbidities and an individual's "appropriateness" for LCS during SDM visits. Therefore, this literature review investigates the impact of comorbidities and multimorbidity among patients undergoing LCS. Based on available evidence and guideline recommendations, we identify comorbidities that should be considered during SDM conversations and review best practices for navigating SDM conversations in the context of LCS. Three conditions are highlighted since they concomitantly portend higher risk of developing lung cancer, potentially increase risk of screening-related evaluation and treatment complications and can be associated with limited life expectancy: chronic obstructive pulmonary disease, idiopathic pulmonary fibrosis, and human immunodeficiency virus infection.

Patient Perspectives on Longitudinal Adherence to Lung Cancer Screening.

BACKGROUND: Annual lung cancer screening (LCS) has mortality benefits for eligible participants; however, studies demonstrate low adherence to follow-up LCS. RESEARCH QUESTION: What are patients' perspectives on barriers and facilitators to adherence to annual LCS? STUDY DESIGN AND METHODS: Forty participants enrolled in the University of Washington/Seattle Cancer Care Alliance LCS program completed a demographic questionnaire and a semistructured interview based on the Tailored Implementation in Chronic Diseases framework to determine attitudes, barriers, and facilitators to longitudinal LCS. Interviews were coded using principles of framework analysis to identify and compare themes between adherent and nonadherent participants. RESULTS: The 40 participants underwent initial LCS in 2017 with negative results. Seventeen were adherent to follow-up annual LCS, whereas 23 were not. Seven overall themes emerged from qualitative analysis, which are summarized as follows: (1) screening experiences are positive and participants have positive attitudes toward screening; (2) provider recommendation is a motivator and key facilitator for most patients; (3) many patients are influenced by personal factors and symptoms and do not understand the importance of asymptomatic screening; (4) common barriers to longitudinal screening include cost, insurance coverage, accessibility, and other medical conditions; (5) patients have variable preferences about how they receive their screening results, and many have residual questions about their results and future screening; (6) reminders are an important facilitator of annual screening; and (7) most patients think a navigator would be beneficial to the screening process, with different aspects of navigation thought to be most helpful. Those who were not adherent more commonly reported individual barriers to screening, competing health concerns, and less provider communication. INTERPRETATION: Key facilitators (eg, patient reminders, provider recommendations) may improve long-term screening behavior, and a number of barriers to the screening process could be addressed through patient navigation.

Patient Identification of Lung Cancer Screening Follow-Up Recommendations and the Association with Adherence.

Rationale: Adherence to follow-up lung cancer screening (LCS) in real-world settings is suboptimal. Patient understanding of screening results and anticipated follow-up may be crucial to adherence. Objectives: To determine patient factors associated with identification of follow-up recommendations as a measure of patient understanding of screening results after LCS, and to determine whether misidentification of follow-up is associated with lower adherence to recommendations. Methods: We performed a prospective study of patients in the University of Washington/Seattle Cancer Care Alliance LCS registry who underwent an initial LCS examination between June 2017 and September 2019. We mailed potential participants a survey after the initial LCS examination, with additional data abstracted from the electronic health record and LCS registry. Participants were asked to identify the timing and next step for their follow-up, with answers corresponding to the lung imaging reporting and data system (Lung-RADS) recommendations. We examined associations between incorrect identification of recommended follow-up and patient-level characteristics, self-perceived benefit/harm of LCS, LCS knowledge, Lung-RADS score, and patient-reported method of LCS results communication (letter, telephone, or in-person). We used multivariable logistic regression to evaluate associations with incorrect identification of recommendations and assessed incorrect identification of recommendations as a potential mechanism for poor adherence in a separate regression model. Results: One hundred eighty-eight participants completed the survey (response rate 44%); 47% misidentified their follow-up recommendation. Those with Lung-RADS scores ⩾3 had higher odds of incorrectly identifying follow-up recommendations than those with scores <3, as did those with lower educational attainment. However, there was no significant association between incorrect identification of follow-up and ultimate adherence to follow-up. Conclusions: Understanding of LCS follow-up appears to be poor, especially among those with lower education levels and positive findings. Among survey responders, incorrect identification of follow-up was not associated with poor adherence, suggesting that other factors, such as provider interventions, may be driving adherence behavior. These results can inform efforts to target improved patient education regarding follow-up for LCS.

A cross-sectional analysis of diagnosis and management of chronic obstructive pulmonary disease in people living with HIV: Opportunities for improvement.

ABSTRACT: Chronic obstructive pulmonary disease (COPD) is common in people living with HIV (PLWH). We sought to evaluate the appropriateness of COPD diagnosis and management in PLWH, comparing results to HIV-uninfected persons.We conducted a cross-sectional analysis of Veterans enrolled in the Examinations of HIV-Associated Lung Emphysema study, in which all participants underwent spirometry at enrollment and reported respiratory symptoms on self-completed surveys. Primary outcomes were misdiagnosis and under-diagnosis of COPD, and the frequency and appropriateness of inhaler prescriptions. Misdiagnosis was defined as having an International Classification of Diseases (ICD)-9 diagnosis of COPD without spirometric airflow limitation (post-bronchodilator forced expiratory volume in 1-second [FEV1]/Forced vital capacity [FVC] < 0.7). Under-diagnosis was defined as having spirometry-defined COPD without a prior ICD-9 diagnosis.The analytic cohort included 183 PLWH and 152 HIV-uninfected participants. Of 25 PLWH with an ICD-9 diagnosis of COPD, 56% were misdiagnosed. Of 38 PLWH with spirometry-defined COPD, 71% were under-diagnosed. In PLWH under-diagnosed with COPD, 85% reported respiratory symptoms. Among PLWH with an ICD-9 COPD diagnosis as well as in those with spirometry-defined COPD, long-acting inhalers, particularly long-acting bronchodilators (both beta-agonists and muscarinic antagonists) were prescribed infrequently even in symptomatic individuals. Inhaled corticosteroids were the most frequently prescribed long-acting inhaler in PLWH (28%). Results were overall similar amongst the HIV-uninfected.COPD was frequently misdiagnosed and under-diagnosed in PLWH, similar to uninfected-veterans. Among PLWH with COPD and a likely indication for therapy, long-acting inhalers were prescribed infrequently, particularly guideline-concordant, first-line long-acting bronchodilators. Although not a first-line controller therapy for COPD, inhaled corticosteroids were prescribed more often.

Provision of Smoking Cessation Resources in the Context of In-Person Shared Decision-Making for Lung Cancer Screening.

BACKGROUND: Lung cancer screening (LCS) is effective at reducing mortality for high-risk smokers. Mortality benefits go beyond early cancer detection, because shared decision-making (SDM) may present a "teachable moment" to reinforce cessation and provide resources. RESEARCH QUESTION: How well is smoking cessation performed during LCS SDM encounters, and what patient and provider characteristics are associated with smoking cessation assistance? STUDY DESIGN AND METHODS: This is a retrospective cohort study of current smokers participating in initial LCS SDM through a multisite program in Seattle, Washington, between 2015-2018. The LCS tracking database and electronic health record were reviewed for demographics, comorbidity data, and clinical encounter information. The primary outcome was provision of a smoking cessation resource, defined as referral to cessation resources, recommendation for nicotine replacement, or prescription for cessation medication. Participant and provider factor associations with the outcome were evaluated using χ2 testing and multivariable logistic regression. RESULTS: Most of the 423 study participants were men (70%), with a median age of 61 (IQR, 58-66) years and median of 50 (41-72) pack-years of smoking. Only 26% of encounters had documentation consistent with SDM. Thirty-nine percent of participants received at least one smoking cessation resource, and only 5% received both counseling referrals and medication. In a multivariable model, the provision of any smoking cessation resource was half as likely in participants with higher levels of comorbidity (Charlson Index >2; OR, 0.53; 95% CI, 0.31-0.81), and half as likely if the ordering provider was not the patient's PCP or their specialist (OR, 0.55; 95% CI, 0.32-0.96). INTERPRETATION: Overall provision of smoking cessation resources was moderate during SDM encounters for LCS, and lower in patients with more comorbidities and when not performed by the patient's PCP or specialist. Interventions are needed to improve smoking cessation counseling and resource utilization at the time of LCS encounters.