Unpacking the relationship between shared decision-making and decisional quality, decision to screen, and screening completion in lung cancer screening.

OBJECTIVES: Lung cancer screening is a complex and individualized decision. To understand how best to support patients in this decision, we must understand how shared decision-making is associated with both decisional and behavioral outcomes. METHODS: Observational cohort study combining patient survey data with electronic health record data of lung screening-eligible patients who recently engaged in a shared decision-making discussion about screening with a primary care clinician. RESULTS: Using multivariable analysis (n = 529), factors associated with higher lung cancer screening decisional quality include higher knowledge (OR = 1.33, p < .0001), lower perceived benefits (OR = 0.90, p = .0004), higher perceived barriers (OR = 1.07, p < .0001), higher self-efficacy (OR = 1.13, p < .0001), and higher levels of perceiving the discussion was shared (OR = 1.04, p < .0001). Factors associated with the patient's decision to screen include older age (OR = 1.12, p = .0050) and higher self-efficacy (OR = 1.11, p = .0407). Factors associated with screening completion included older age (OR = 1.05, p = .0050), higher knowledge (OR = 1.24, p = .0045), and higher self-efficacy (OR = 1.12, p = .0003). CONCLUSIONS: Shared decision-making in lung cancer screening is a dyadic process between patient and clinician. As we continue to strive for high-quality patient-centered care, patient decision quality may be enhanced by targeting key factors such as high-quality knowledge, self-efficacy, and fostering a shared discussion to support patient engagement in lung cancer screening decisions.

Evaluation of Algorithms Using Automated Health Plan Data to Identify Breast Cancer Recurrences.

BACKGROUND: We updated algorithms to identify breast cancer recurrences from administrative data, extending previously developed methods. METHODS: In this validation study, we evaluated pairs of breast cancer recurrence algorithms (vs. individual algorithms) to identify recurrences. We generated algorithm combinations that categorized discordant algorithm results as no recurrence [High Specificity and PPV (positive predictive value) Combination] or recurrence (High Sensitivity Combination). We compared individual and combined algorithm results to manually abstracted recurrence outcomes from a sample of 600 people with incident stage I-IIIA breast cancer diagnosed between 2004 and 2015. We used Cox regression to evaluate risk factors associated with age- and stage-adjusted recurrence rates using different recurrence definitions, weighted by inverse sampling probabilities. RESULTS: Among 600 people, we identified 117 recurrences using the High Specificity and PPV Combination, 505 using the High Sensitivity Combination, and 118 using manual abstraction. The High Specificity and PPV Combination had good specificity [98%, 95% confidence interval (CI): 97-99] and PPV (72%, 95% CI: 63-80) but modest sensitivity (64%, 95% CI: 44-80). The High Sensitivity Combination had good sensitivity (80%, 95% CI: 49-94) and specificity (83%, 95% CI: 80-86) but low PPV (29%, 95% CI: 25-34). Recurrence rates using combined algorithms were similar in magnitude for most risk factors. CONCLUSIONS: By combining algorithms, we identified breast cancer recurrences with greater PPV than individual algorithms, without additional review of discordant records. IMPACT: Researchers should consider tradeoffs between accuracy and manual chart abstraction resources when using previously developed algorithms. We provided guidance for future studies that use breast cancer recurrence algorithms with or without supplemental manual chart abstraction.

What Do Adolescents and Their Parents Need From Mental Health Integration in Primary Care? A Qualitative Exploration of Design Insights.

INTRODUCTION: The design of integrated adolescent mental health care should address needs and preferences of patients and parents/guardians. METHOD: We conducted interviews and focus groups with adolescents aged 13-17 years who received care at Kaiser Permanente Washington in 2020 and interviews with parents of such adolescents. We sought to (1) understand the challenges of primary care-based mental health and substance use screening and care for adolescents and (2) identify program design solutions. Sessions were audio-recorded, transcribed, and coded. Thematic analysis was applied to identify key challenges and design solutions. RESULTS: Emerging themes from interviews (n = 41) and focus groups (n = 10) were summarized in five overarching design principles: Engagement, Privacy, Communication, Choice, and Ease. Each design principle was expanded for operationalization within a new health system program. DISCUSSION: Health systems serving adolescents in primary care may consider application of these design principles to the development of mental health integration programs.

Surveillance Breast MRI and Mammography: Comparison in Women with a Personal History of Breast Cancer.

Background There is lack of consensus regarding the use of breast MRI for routine surveillance for second breast cancer events in women with a personal history of breast cancer. Purpose To compare performance of surveillance mammography with breast MRI. Materials and Methods This observational cohort study used prospectively collected data and included 13 266 women age 18 years and older (mean age, 60 years ± 13) with stage 0-III breast cancer who underwent 33 938 mammographic examinations and 2506 breast MRI examinations from 2005 to 2012 in the Breast Cancer Surveillance Consortium. Women were categorized into two groups: mammography alone (n = 11 745) or breast MRI (n = 1521). Performance measures were calculated by using end-of-day assessment and occurrence of second breast cancer events within 1 year of imaging. Logistic regression was used to compare performance for breast MRI versus mammography alone, adjusting for women, examination, and primary breast cancer characteristics. Analysis was conducted on a per-examination basis. Results Breast MRI was associated with younger age at diagnosis, chemotherapy, and higher education and income. Raw performance measures for breast MRI versus mammography were as follows, respectively: cancer detection rates, 10.8 (95% confidence interval [CI]: 6.7, 14.8) versus 8.2 (95% CI: 7.3, 9.2) per 1000 examinations; sensitivity, 61.4% (27 of 44; 95% CI: 46.5%, 76.2%) versus 70.3% (279 of 397; 95% CI: 65.8%, 74.8%); and biopsy rate, 10.1% (253 of 2506; 95% CI: 8.9%, 11.3%) versus 4.0% (1343 of 33 938; 95% CI: 3.7%, 4.2%). In multivariable models, breast MRI was associated with higher biopsy rate (odds ratio [OR], 2.2; 95% CI: 1.9, 2.7; P < .001) and cancer detection rate (OR, 1.7; 95% CI: 1.1, 2.7; P = .03) than mammography alone. However, there were no differences in sensitivity (OR, 1.1; 95% CI: 0.4, 2.9; P = .84) or interval cancer rate (OR, 1.1; 95% CI: 0.6, 2.2; P = .70). Conclusion Comparison of the performance of surveillance breast MRI with mammography must account for patient characteristics. Whereas breast MRI leads to higher biopsy and cancer detection rates, there were no significant differences in sensitivity or interval cancers compared with mammography. © RSNA, 2019 Online supplemental material is available for this article. See also the editorial by Newell in this issue.

A qualitative study exploring patient motivations for screening for lung cancer.

BACKGROUND: Low-dose computed tomography (LDCT) of the chest for lung cancer screening of heavy smokers was given a 'B' rating by the U.S. Preventive Services Task Force (USPSTF) in 2013, and gained widespread insurance coverage in the U.S. in 2015. Lung cancer screening has since had low uptake. However, for those that do choose to screen, little is known about patient motivations for completing screening in real-world practice. OBJECTIVE: To explore the motivations for screening-eligible patients to screen for lung cancer. METHODS: Semi-structured qualitative interviews were conducted with 20 LDCT screen-completed men and women who were members of an integrated mixed-model healthcare system in Washington State. From June to September 2015, participants were recruited and individual interviews performed about motivations to screen for lung cancer. Audio-recorded interviews were transcribed and analyzed using inductive content analysis by three investigators. RESULTS: Four primary themes emerged as motivations for completing LDCT lung cancer screening: 1) trust in the referring clinician; 2) early-detection benefit; 3) low or limited harm perception; and 4) friends or family with advanced cancer. CONCLUSION: Participants in our study were primarily motivated to screen for lung cancer based on perceived benefit of early-detection, absence of safety concerns, and personal relationships. Our findings provide new insights about patient motivations to screen, and can potentially be used to improve lung cancer screening uptake and shared decision-making processes.

From Principles to Practice: Real-World Patient and Stakeholder Engagement in Breast Cancer Research.

The Patient-Centered Outcomes Research Institute (PCORI) in Washington, DC, has catalyzed a meaningful shift in the composition of research project teams since its initial research funding cycle in 2011. Despite the influx of funding in the research community for patient-centered research, research on how to effectively engage patients and stakeholders in the research process is still relatively nascent. Kaiser Permanente Washington Health Research Institute (KPWHRI) in Seattle, WA, was an early recipient of PCORI research funding and, as of December 2017, has received 8 PCORI research awards totaling nearly $15 million. Anticipating the pivotal importance of PCORI's patient-focused approach, KPWHRI developed a set of 8 principles to guide how research teams should work with patients and other stakeholders to simultaneously achieve research aims and embrace this new paradigm in how research teams collaborate. With a goal of assisting other research teams, this article describes the genesis of the KPWHRI principles, their relevance to patient- and stakeholder-engaged research, and how these principles were brought to life in the context of a specific PCORI-funded project on surveillance imaging in women after a breast cancer diagnosis.

Cancer Screening Reminders: Addressing the Spectrum of Patient Preferences.

CONTEXT: Health care systems continue to seek evidence about how to optimize the efficiency and effectiveness of cancer screening reminders. Annual reminders to receive preventive services can be an efficient strategy. OBJECTIVE: To understand patient motivators and barriers to cancer screening and preferences about reminder strategies. DESIGN: We conducted 11 focus groups among adults recommended for cancer screening within Kaiser Permanente Washington. We held separate focus groups with women aged 21 to 49 years, women 50 to 75 years, and men 50 to 75 years. We used an inductive, validated coding scheme for analysis. MAIN OUTCOME MEASURES: Motivators and barriers to obtaining recommended cancer screening and general cancer screening reminder content and modality preferences. RESULTS: Half of our participants were women aged 50 to 75 years, and 25% were men aged 50 to 75 years. Differences by age, sex, insurance status, financial status, and health beliefs all drove the participants' preferences for whether they seek these recommended services and how and when they wish to be reminded about recommended cancer screening. Most participants preferred personalized reminders, and many favored receiving reminders less than 3 months before the recommended procedure date rather than a consolidated annual reminder. Younger participants more commonly requested electronic reminders, such as texts and e-mails. CONCLUSION: Optimizing cancer screening reminders within a health care system involves a multifaceted approach that enables members to request which form of reminder they prefer (eg, electronic, paper, telephone) and the timing with which they want to be reminded, while staying affordable and manageable to the health care system.

Breast cancer screening outreach effectiveness: Mammogram-specific reminders vs. comprehensive preventive services birthday letters.

We compared the effectiveness of two outreach strategies on timely mammography adherence: a mammogram-specific reminder letter (sent just before a woman was due) to a birthday letter (addresses multiple preventive services and not timed around due dates). We evaluated screening mammography adherence following 79,848 mammogram-specific and 151,626 birthday letters mailed between 2002 and 2012 to women aged 40-74years enrolled in Kaiser Permanente Washington. Screening mammogram adherence was specifically tied to due date and was evaluated separately by age group and up-to-date or overdue status at the time of mailing. We used generalized estimating equations to account for correlation between repeated observations, to model the odds of screening mammography adherence by letter type. Among women up-to-date, adherence following birthday letters was 22-76% lower compared to the mammogram-specific reminders, with the greatest decreases in adherence in women aged 70-74. Birthday letters were more effective at activating screening uptake among some subgroups of overdue women aged 50-69 and most overdue women aged 70-74, but universally low adherence rates were observed in overdue women. Increasing number of recommended services for women aged 50-74 who were up-to-date resulted in 12-17% lower mammography adherence, but had no effect in women aged 40-49 or in overdue women. Birthday letters are less effective than mammogram-specific reminder letters at prompting women to undergo timely breast cancer screening, particularly among women up-to-date with screening. Birthday letters may be effective at increasing overall preventive care; however, supplemental outreach may be needed around the due date to increase timely preventive services receipt.

Women's experiences and preferences regarding breast imaging after completing breast cancer treatment.

BACKGROUND: After treatment for breast cancer, most women receive an annual surveillance mammography to look for subsequent breast cancers. Supplemental breast MRI is sometimes used in addition to mammography despite the lack of clinical evidence for it. Breast imaging after cancer treatment is an emotionally charged experience, an important part of survivorship care, and a topic about which limited patient information exists. We assessed women's experiences and preferences about breast cancer surveillance imaging with the goal of determining where gaps in care and knowledge could be filled. PARTICIPANTS AND METHODS: We conducted six focus groups with a convenience sample of 41 women in California, North Carolina, and New Hampshire (USA). Participants were aged 38-75 years, had experienced stage 0-III breast cancer within the previous 5 years, and had completed initial treatment. We used inductive thematic analysis to identify key themes from verbatim transcripts. RESULTS: Women reported various types and frequencies of surveillance imaging and a range of surveillance imaging experiences and preferences. Many women experienced discomfort during breast imaging and anxiety related to the examination, primarily because they feared subsequent cancer detection. Women reported trust in their providers and relied on providers for imaging decision-making. However, women wanted more information about the treatment surveillance transition to improve their care. CONCLUSION: There is significant opportunity in breast cancer survivorship care to improve women's understanding about breast cancer surveillance imaging and to provide enhanced support to them at the time their initial treatment ends and at the time of surveillance imaging examinations.

A qualitative study exploring why individuals opt out of lung cancer screening.

Background: Lung cancer screening with annual low-dose computed tomography is relatively new for long-term smokers in the USA supported by a US Preventive Services Task Force Grade B recommendation. As screening programs are more widely implemented nationally and providers engage patients about lung cancer screening, it is critical to understand behaviour among high-risk smokers who opt out to improve shared decision-making processes for lung cancer screening. Objective: The purpose of this study was to explore the reasons for screening-eligible patients' decisions to opt out of screening after receiving a provider recommendation. Methods: Semi-structured qualitative telephone interviews were performed with 18 participants who met lung cancer screening criteria for age, smoking and pack-year history in Washington State from November 2015 to January 2016. Two researchers with cancer screening and qualitative methodology expertise conducted data analysis using thematic content analytic procedures from audio-recorded interviews. Results: Five primary themes emerged for reasons of opting out of lung cancer screening: (i) Knowledge Avoidance; (ii) Perceived Low Value; (iii) False-Positive Worry; (iv) Practical Barriers; and (v) Patient Misunderstanding. Conclusion: The participants in our study provided insight into why some patients make the decision to opt out of low-dose computed tomography screening, which provides knowledge that can inform intervention development to enhance shared decision-making processes between long-term smokers and their providers and decrease decisional conflict about screening.

Latina and Black/African American Women's Perspectives on Cancer Screening and Cancer Screening Reminders.

INTRODUCTION: Racial and ethnic disparities continue to exist in cancer screening rates, especially among US Latina and Black/African American populations. We conducted six focus groups among 41 women from these communities in order to better understand their preferences about cancer screening reminders and the motivators and deterrents they face in obtaining recommended breast, cervical, and colon cancer screening. METHODS: Using self-reported patient race/ethnicity from electronic medical records of a large, integrated health care system in Seattle, we recruited women ages 30-60 to participate in one of five 2-hour focus groups. Using verbatim transcripts from these discussions, we conducted a qualitative analysis to identify common themes. RESULTS: The focus group participants were primarily strong endorsers and utilizers of recommended breast, cervical, and colon cancer screening services. Insurance and belief in preventive care were the most common motivators that they cited in obtaining cancer screening. However, they still reported multiple barriers to getting recommended cancer screening for themselves and community members, including lack of time, conflicting information about screening intervals, distrust in the health care system, and a lack of understanding of the benefits of preventive care. CONCLUSIONS: Efforts to improve understanding about the benefits of cancer screening, clarify cancer screening guideline recommendations, increase cultural competency among health care professionals, and expand the times and locations where cancer screening is available are all options that may improve cancer screening rates among Latinas and Black/African American women.

Comparative effectiveness of two outreach strategies for cervical cancer screening.

OBJECTIVE: Test-specific reminder letters can improve cancer screening adherence. Little is known about the effectiveness of a reminder system that targets the whole person by including multiple screening recommendations per letter. METHODS: We compared the effectiveness of a Pap-specific reminder letter sent 27months after a woman's last Pap, to a reminder letter that included up to seven preventive service recommendations sent before a woman's birthday ("birthday letter") on Pap smear adherence from a natural experiment occurring in routine clinical care. Participants included 82,016 women from Washington State who received 72,615 Pap-specific letters between 2003 and 2007 and 100,218 birthday letters between 2009 and 2012. We defined adherence as having a Pap test within a six month window around the Pap test due date. Using logistic regression, we calculated adjusted odds ratios (OR) for adherence with 95% confidence intervals (CI) following the birthday letter with 1-2 recommendations, 3-5 recommendations, and 6-7 recommendations compared to the Pap-specific letter. All analyses were stratified by whether a woman was up-to-date or overdue for screening at the time she received a letter. RESULTS: Adjusted ORs showed reduced adherence following the birthday letter compared with the Pap-specific letter for up-to-date women whether the letter had 1-2 recommendations (OR=0.37, 95%CI=0.36-0.39), 3-5 recommendations (OR=0.44, 95%CI=0.42-0.45), or 6-7 recommendations (OR=0.36, 95%CI=0.32-0.40). We noted no difference in Pap-test adherence between letter types for overdue women. CONCLUSIONS: In conclusion, for women regularly adherent to screening, an annual birthday letter containing reminders for multiple preventive services was less effective at promoting cervical cancer screening compared with a Pap-specific letter.

The patient voice in research-evolution of a role.

PLAIN ENGLISH SUMMARY: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research. ABSTRACT: Engaging patients in research studies is becoming more common because it makes research and its results more relevant for patients. It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to work on a research team but very little has been written about this from the patient's perspective. As patient partners and researchers on a breast cancer study, we share our experience to develop a patient-centered project and the inclusion of patient collaborators as scientific experts. Over time, the role of the patient partner has developed to include unanticipated roles and responsibilities. We use our experience to share how the patient voice can affect the execution of a research study and to provide a model for meaningfully engaging patients in research.