When Is a Harm a Harm? Discordance between Patient and Medical Experts’ Evaluation of Lung Cancer Screening Attributes

Abstract

Background A shared decision-making (SDM) process for lung cancer screening (LCS) includes a discussion between clinicians and patients about benefits and potential harms. Expert-driven taxonomies consider mortality reduction a benefit and consider false-positives, incidental findings, overdiagnosis, overtreatment, radiation exposure, and direct and indirect costs of LCS as potential harms. Objective To explore whether patients conceptualize the attributes of LCS differently from expert-driven taxonomies. Design Cross-sectional study with semistructured interviews and a card-sort activity. Participants Twenty-three Veterans receiving primary care at a Veterans Affairs Medical Center, 55 to 73 y of age with 30 or more pack-years of smoking. Sixty-one percent were non-Hispanic African American or Black, 35% were non-Hispanic White, 4% were Hispanic, and 9% were female. Approach Semistructured interviews with thematic coding. Main Measures The proportion of participants categorizing each attribute as a benefit or harm and emergent themes that informed this categorization. Key Results In addition to categorizing reduced lung cancer deaths as a benefit (22/23), most also categorized the following as benefits: routine annual screening (8/9), significant incidental findings (20/23), follow-up in a nodule clinic (20/23), and invasive procedures (16/23). Four attributes were classified by most participants as a harm: false-positive (13/22), overdiagnosis (13/23), overtreatment (6/9), and radiation exposure (20/22). Themes regarding the evaluation of LCS outcomes were 1) the value of knowledge about body and health, 2) anticipated positive and negative emotions, 3) lack of clarity in terminology, 4) underlying beliefs about cancer, and 5) risk assessment and tolerance for uncertainty. Conclusions Anticipating discordance between patient- and expert-driven taxonomies of the benefits and harms of LCS can inform the development and interpretation of value elicitation and SDM discussions.

A Veteran-Centric Web-Based Decision Aid for Lung Cancer Screening: Usability Analysis

“…Our qualitative data provide additional insights on participant perceptions of the tool regarding usability and usefulness. The design of our value assessment measures was based on qualitative studies conducted with veterans regarding how they perceived and valued the potential benefits and harms of LCS [ 30 ]. In usability testing, the value assessments were completed without difficulty, with some participants commenting that they enjoyed responding to these scales and found them helpful.…”

“…Stakeholder focus groups (clinicians) and structured interviews (veterans) further informed the content and features of the prototype LCSDecTool [ 30 ]. The LCSDecTool was designed to (1) use in advance of or during a primary care clinical visit where LCS may be initiated, (2) ensure that veterans understand the key benefits and potential harms of LCS, (3) help veterans weigh the benefits and potential harms of LCS, (4) provide resources for smoking cessation and mental health treatment, (5) support communication with their provider regarding this decision, and (6) include a clinician portal to streamline the use of the tool with a clinician in the clinical setting.…”

“…Qualitative analysis of 23 (72%) veteran interviews indicates wide variation in how LCS attributes are valued and that attitude and beliefs about LCS may affect value ratings [ 30 ]…”

Context Matters: Emotional Sensitivity to Probabilities and the Bias for Action in Cancer Treatment Decisions

“…89,90 Overdiagnosis and subsequent treatment of indolent cancers do cause harm, and those risks should be factored into screening decisions, 91 yet the appetite for screening has been strong for decades, thanks to public health campaigns promoting screening programs and emphasizing the benefits of early detection. 92,93 More recent studies continue to show a strong preference for screening, often with little recognition of the downsides 94,95 but also when participants do understand the limitations. 24 A widely recommended remedy for this overscreening is informed decision making, where patients are offered information about the risks and benefits of screening as well as not screening.…”

Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy

“…This is consistent with research that indicates patients may conceptualize cancer screening, including associated harms and benefits, differently than experts or providers with whom they are engaged in SDM processes. 20 Likewise, there is potential for tension between stakeholder groups in the purpose of using DAs to achieve shared decisions that warrants further exploration. For example, in our study, PCPs preferred sharing information on multiple screening modalities, while some experts suggested that evidence-based modalities unavailable in patients’ health care contexts could be omitted from DAs.…”