Preference-based Decisions Research Articles

Identifying Strategies to Improve Shared Decision Making for Pregnant Patients' Decisions about Prenatal Genetic Screens and Diagnostic Tests.

Prenatal genetic screens and diagnostic tests are vital components of prenatal care. The first prenatal visit is a critical time in the decision-making process when patients decide whether to use these tests in addition to address a series of other essential prenatal care aspects. We conducted this study to examine the role of a shared decision-making (SDM) instrument to support these discussions. We conducted a cluster randomized controlled trial of patients allocated to an SDM tool or usual care at their first prenatal visit. Participants completed a baseline survey to measure decision-making needs and preferences. Direct observation was conducted and analyzed using the OPTION scale to measure SDM during prenatal genetic testing discussions. Levels of SDM were similar across groups (P = 0.081). The highest levels of SDM were observed during screening test discussions (NEST 2.4 ± 0.9 v. control 2.6 ± 1.0). Lowest levels were observed in discussions about patients' preference for risk versus diagnostic information (NEST 1.0 ± 1.1 v. control 1.2 ± 1.3). Study findings demonstrate the need for targeted patient-focused and provider-focused efforts to improve SDM to enhance patients' informed decision making about these options. Importantly, patients' baseline knowledge and attitudes need to be considered given that patients with less knowledge may need more carefully crafted communication. Choices about whether, when, and how to use prenatal genetic tests are highly preference-based decisions, with patients' baseline attitudes about these options as a major driver in health care discussions.The decision-making process is also shaped by patient preferences regarding a shared or informed decision-making process for medical decisions that are highly personal and have significant ramifications for obstetric outcomes.There is a need to develop targeted efforts to improve decision making and enhance patients' ability to make informed decisions about prenatal genetic tests in early pregnancy.

Information sources and congruency modulate preference-based decision-making processes

ABSTRACT Preference-based decisions often need to combine multiple pieces of information. This study investigated how the number of information sources and information congruency affect decision performance. Participants made preference-based choices between two groups of food items. Increasing the number of items in each option led to slower and less accurate decisions. Drift-diffusion modelling showed that more information sources relate to a slower rate of evidence accumulation. Therefore, the additional information impeded rather than improved the decision accuracy. In Experiment 2, each choice option contained either fully congruent information or one piece of incongruent information. Decisions with incongruent information is associated with a lower drift rate than that with congruent information, leading to inferior behaviorual performance. Further model simulations support that the change in attention weighting over information sources leads to the observed effects of item numbers and item congruency. Our results suggest a bounded combination of information sources during preference-based decisions.

Challenges in patient-centered germline testing delivery for veterans with advanced prostate cancer (APC).

71 Background: In a quest to tailor care to tumor biology, oncologists now offer germline testing to all patients with APC. We explored the degree to which germline testing decisions reflect patient preferences about potential benefits and harms discussed by oncologists. Methods: We conducted a prospective qualitative study of consecutive patients with APC who were offered germline testing at an oncology visit at the San Francisco VA. We audio-recorded visits and conducted semi-structured interviews using a theory-informed guide with patients after their visit to understand their decision-making process for germline testing. We analyzed the interviews using the Critical Incident Technique to identify positive or negative deviations from well-informed, preference-based decisions. We also reviewed consent documentation in the electronic health record. Results: Of 61 patients approached, 30 completed interviews after their germline testing discussion. Mean age was 75y; 19 (63%) were White, 9 (30%) Black, and 2 (6%) Other race; and 13 (43%) were service-connected for APC. Twenty-six (87%) patients consented to germline testing; the primary reasons were altruistic (to help family and contribute to knowledge). Four patients (13%) declined testing, all primarily due to the fear of potential loss or reduction of service-connected benefits. All four patients reported they would reconsider testing if assured that these benefits would be protected regardless of test results. Of the four patients, two had initially consented to testing with their oncologist but later changed their minds and did not notify anyone. The two patients received germline testing when they underwent PSA testing, but they were not aware that they had germline testing performed. Both had negative test results, and they therefore did not experience threats to their service-connected benefits. Conclusions: Some Veterans with service-connected benefits for APC decline germline testing due to the fear of potential loss or reduction of these benefits, thereby foregoing potential treatment benefits. An advisory board is working with the Veterans Benefits Administration to protect service-connected benefits for these Veterans. In addition, a few Veterans may agree to germline testing with their oncologist, but then change their minds due to concerns surrounding service-connected benefits. From a quality improvement perspective, the experiences of the patients in this study who changed their minds counts as a near-miss. Although uptake of germline testing was high in this cohort, current workflows may need to be addressed to account for a change of heart, and further research is needed to understand root causes and identify possible remedies of the near-misses. Overall, our findings illustrate the importance of informed consent for germline testing to ensure that results are desired and valued by both oncologist and patient.

Identifying barriers and facilitators to the inclusion of older adults living in UK care homes in research: a scoping review

BackgroundWith an ageing population, older adults will have more complex health and social care needs and many of these older adults will be living in care homes. Despite the growth in care home populations, care home residents are often excluded from research that could potentially benefit their care. The purpose of this scoping review is to explore resident-related barriers and facilitators to including older people living in UK care homes in research and to identify potential approaches to modify such barriers.MethodThe 6-stage scoping review methodology framework proposed by Arksey and O’Malley guided this review. Five electronic databases (MedLine, PsychINFO, Scopus, Web of Science, CINAHL) and grey literature were searched. Identified articles went through two levels of screening, and those deemed relevant were collated, summarised and reported using a thematic analysis approach.Results90 reports were eligible for inclusion and were synthesised into 7 themes and related subthemes: (1) research design; (2) understanding and beliefs about research (resident and care home staff); (3) communication; (4) relationships; (5) eligibility criteria (resident and care home); (6) preference-based decisions; and (7) care home staff and environment. Given the complex interplay of the factors identified, both direct and indirect factors were included.ConclusionsA number of recurring barriers and facilitators to the inclusion of care home residents in research are reported. However, isolating resident-related barriers was complex as both direct and indirect factors must be considered as influential. Understanding the barriers and facilitators to inclusion will enable these factors to be addressed and increase the evidence-base for care provided to older people living in care homes.

The framing of choice nudges prolonged processing in the evaluation of food images.

Previous research suggests that the type of choice framing for evaluation tasks can influence the relationship between response time and preference-based decision-making. Two separable factors may modulate the preference-based decision-making: The set of choice options (with or without an option to defer) and the constraint of choice (with high or low maximum for inclusion). To clarify how these factors influence the process of preference-based decision-making, we designed a virtual-shopping paradigm with a series of food images presented consecutively, while varying the set of choice options and the constraint of choice. For the set of choice options, subjects were asked to choose for each food image in either a two-options condition (i.e., "take it" or "leave it"), or a three-options condition (i.e., "take it," "wait," or "leave it"). For the constraint of choice, subjects were instructed to select a maximum of either five items out of 80 (i.e., highly constrained) or 15 items out of 80 (i.e., less constrained). As in previous findings, the response times were consistently longer for "take it" than for "leave it" options. Importantly, this difference was exacerbated under high constraint, when subjects could select only five items, suggesting a role for opportunity-cost consideration in the decision process. Furthermore, as compared to two-options tasks, subjects consistently spent more time overall in the three-options tasks (with the option to defer), displaying lower acceptance rates, and particularly long response times for the "wait" option. This finding suggests that choice framing with a defer option nudges prolonged processing.

Can Oncologists Prompt Patient Prognostic Awareness to Enhance Decision-Making? Data From the NEOetic Study.

Anti-neoplastic therapy improves the prognosis for advanced cancer, albeit it is not curative. An ethical dilemma that often arises during patients' first appointment with the oncologist is to give them only the prognostic information they can tolerate, even at the cost of compromising preference-based decision-making, versus giving them full information to force prompt prognostic awareness, at the risk of causing psychological harm. We recruited 550 participants with advanced cancer. After the appointment, patients and clinicians completed several questionnaires about preferences, expectations, prognostic awareness, hope, psychological symptoms, and other treatment-related aspects. The aim was to characterize the prevalence, explanatory factors, and consequences of inaccurate prognostic awareness and interest in therapy. Inaccurate prognostic awareness affected 74%, conditioned by the administration of vague information without alluding to death (odds ratio [OR] 2.54; 95% CI, 1.47-4.37, adjusted P = .006). A full 68% agreed to low-efficacy therapies. Ethical and psychological factors oriented first-line decision-making, in a trade-off in which some lose quality of life and mood, for others to gain autonomy. Imprecise prognostic awareness was associated with greater interest in low-efficacy treatments (OR 2.27; 95% CI, 1.31-3.84; adjusted P = .017), whereas realistic understanding increased anxiety (OR 1.63; 95% CI, 1.01-2.65; adjusted P = 0.038), depression (OR 1.96; 95% CI, 1.23-3.11; adjusted P = .020), and diminished quality of life (OR 0.47; 95% CI, 0.29-0.75; adjusted P = .011). In the age of immunotherapy and targeted therapies, many appear not to understand that antineoplastic therapy is not curative. Within the mix of inputs that comprise inaccurate prognostic awareness, many psychosocial factors are as relevant as the physicians' disclosure of information. Thus, the desire for better decision-making can actually harm the patient.

The effect of perceptual organization on numerical and preference-based decisions shows inter-subject correlation.

Individual differences in cognitive processing have been the subject of intensive research. One important type of such individual differences is the tendency for global versus local processing, which was shown to correlate with a wide range of processing differences in fields such as decision making, social judgments and creativity. Yet, whether these global/local processing tendencies are correlated within a subject across different domains is still an open question. To address this question, we develop and test a novel method to quantify global/local processing tendencies, in which we directly set in opposition the local and global information instead of instructing subjects to specifically attend to one processing level. We apply our novel method to two different domains: (1) a numerical cognition task, and (2) a preference task. Using computational modeling, we accounted for classical effects in choice and numerical-cognition. Global/local tendencies in both tasks were quantified using a salience parameter. Critically, the salience parameters extracted from the numerical cognition and preference tasks were highly correlated, providing support for robust perceptual organization tendencies within an individual.

Multi-Objective Optimisation of Urban Form: A Framework for Selecting the Optimal Solution

The complexity associated with the design of urban tissues is driven by the multitude of design goals that influence urban development and growth. This complexity is amplified by the design goals being inherently conflicting, necessitating preference-based decisions within the design process—an approach that results in predetermined design solutions driven by personal biases. The utility of population-based optimisation algorithms addresses this by allowing for the examination of multiple conflicting objectives within the same design problem, negating the need for trade-off decisions between the design goals. The application of these algorithms is associated with three primary steps. The first is the formulation of the design problem, the second is the application of the algorithm, and the third is selecting the most optimal solution from the algorithm’s output. This paper examines the third step in this process, in which various methods are employed to facilitate data-driven selection mechanisms that are both objective as well as subjective in their formulation. The selection mechanisms are demonstrated on a speculative urban tissue that examines the potential of inhabiting interstitial spaces, through various morphological interventions, within the urban fabric. The results present a scalable and adaptable framework that assists designers employing multi-objective evolutionary algorithms (MOEAs) to select the optimal solution from their generated populations, a challenge commonly associated with the application of MOEAs in design.

Spontaneous Motor Recovery after Cervical Spinal Cord Injury: Issues for Nerve Transfer Surgery Decision Making.

Retrospective cohort study. To quantify spontaneous upper extremity motor recovery between 6 and 12 months after spinal cord injury (SCI) to help guide timing of nerve transfer surgery to improve upper limb function in cervical SCI. Nineteen European SCI rehabilitation centers. Data was extracted from the European Multicenter Study of SCI database for individuals with mid-level cervical SCI (N = 268). Muscle function grades at 6 and 12 months post-SCI were categorized for analysis. From 6 to 12 months after SCI, spontaneous surgically-relevant recovery was limited. Of all limbs (N = 263) with grade 0-2 elbow extension at 6 months, 4% regained grade 4-5 and 11% regained grade 3 muscle function at 12 months. Of all limbs (N = 380) with grade 0-2 finger flexion at 6 months, 3% regained grade 4-5 and 5% regained grade 3 muscle function at 12 months. This information supports early (6 month) post-injury surgical consultation and evaluation. With this information, individuals with SCI can more fully engage in preference-based decision-making about surgical intervention versus continued rehabilitation and spontaneous recovery to gain elbow extension and/or hand opening and closing.

Preferences for COVID-19 epidemic control measures among French adults: a discrete choice experiment.

In this stated preferences study, we describe for the first time French citizens’ preferences for various epidemic control measures, to inform longer-term strategies and future epidemics. We used a discrete choice experiment in a representative sample of 908 adults in November 2020 (before vaccination was available) to quantify the trade-off they were willing to make between restrictions on the social, cultural, and economic life, school closing, targeted lockdown of high-incidence areas, constraints to directly protect vulnerable persons (e.g., self-isolation), and measures to overcome the risk of hospital overload. The estimation of mixed logit models with correlated random effects shows that some trade-offs exist to avoid overload of hospitals and intensive care units, at the expense of stricter control measures with the potential to reduce individuals’ welfare. The willingness to accept restrictions was shared to a large extent across subgroups according to age, gender, education, vulnerability to the COVID-19 epidemic, and other socio-demographic or economic variables. However, individuals who felt at greater risk from COVID-19, and individuals expressing high confidence in the governmental management of the health and economic crisis, more easily accepted all these restrictions. Finally, we compared the welfare impact of alternative strategies combining different epidemic control measures. Our results suggest that policies close to a targeted lockdown or with medically prescribed self-isolation were those satisfying the largest share of the population and achieving high gain in average welfare, while average welfare was maximized by the combination of all highly restrictive measures. This illustrates the difficulty in making preference-based decisions on restrictions.Supplementary InformationThe online version contains supplementary material available at 10.1007/s10198-022-01454-w.

Responses to Heartbeats in Ventromedial Prefrontal Cortex Contribute to Subjective Preference-Based Decisions.

Forrest Gump or The Matrix? Preference-based decisions are subjective and entail self-reflection. However, these self-related features are unaccounted for by known neural mechanisms of valuation and choice. Self-related processes have been linked to a basic interoceptive biological mechanism, the neural monitoring of heartbeats, in particular in ventromedial prefrontal cortex (vmPFC), a region also involved in value encoding. We thus hypothesized a functional coupling between the neural monitoring of heartbeats and the precision of value encoding in vmPFC. Human participants of both sexes were presented with pairs of movie titles. They indicated either which movie they preferred or performed a control objective visual discrimination that did not require self-reflection. Using magnetoencephalography, we measured heartbeat-evoked responses (HERs) before option presentation and confirmed that HERs in vmPFC were larger when preparing for the subjective, self-related task. We retrieved the expected cortical value network during choice with time-resolved statistical modeling. Crucially, we show that larger HERs before option presentation are followed by stronger value encoding during choice in vmPFC. This effect is independent of overall vmPFC baseline activity. The neural interaction between HERs and value encoding predicted preference-based choice consistency over time, accounting for both interindividual differences and trial-to-trial fluctuations within individuals. Neither cardiac activity nor arousal fluctuations could account for any of the effects. HERs did not interact with the encoding of perceptual evidence in the discrimination task. Our results show that the self-reflection underlying preference-based decisions involves HERs, and that HER integration to subjective value encoding in vmPFC contributes to preference stability.SIGNIFICANCE STATEMENT Deciding whether you prefer Forrest Gump or The Matrix is based on subjective values, which only you, the decision-maker, can estimate and compare, by asking yourself. Yet, how self-reflection is biologically implemented and its contribution to subjective valuation are not known. We show that in ventromedial prefrontal cortex, the neural response to heartbeats, an interoceptive self-related process, influences the cortical representation of subjective value. The neural interaction between the cortical monitoring of heartbeats and value encoding predicts choice consistency (i.e., whether you consistently prefer Forrest Gump over Matrix over time. Our results pave the way for the quantification of self-related processes in decision-making and may shed new light on the relationship between maladaptive decisions and impaired interoception.

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map.

Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

Shared decision-making among people with problematic alcohol/other drug use and co-occurring mental health conditions: A systematic review.

Over half of people presenting to alcohol/other drug (AOD) treatment services also have a mental health condition. Guidelines support numerous viable treatment options, meaning that treatment decisions need to be evidence based and patients' preferences need to be considered. Shared decision-making (SDM) facilitates evidence- and preference-based decisions and is well researched in other health-care areas. Little is known, however, about people's attitudes towards and experience of SDM in co-occurring AOD and mental health conditions. Systematic literature review via key database searches MEDLINE, EMBASE, PsycINFO, Scopus, the Cochrane Central Register of Controlled Trials and Database of Systematic Reviews (January 2000-July 2019). Two independent reviewers assessed study eligibility, extracted data and rated study quality using a validated tool. Of 2393 articles identified, 10 studies were retained for final inclusion. The reviewed studies suggested that SDM is a well-accepted and preferred approach to treatment decision-making. SDM-based interventions are viewed as feasible, acceptable and useful; are associated with improvements in the quality of the decision-making process and the decision made; and have accrued less consistent evidence to support improvements in patient-related outcomes (e.g. symptoms, treatment adherence/engagement). This is the first rigorous synthesis of the empirical literature on SDM in co-occurring AOD and mental health conditions. SDM remains a nascent area of research in comorbidity treatment. Preliminary evidence supports SDM's acceptability, feasibility and utility in managing mental health and AOD comorbidities. Further research is needed to build the evidence base, especially with regard to the efficacy of SDM at improving patient-related outcomes.

The roles of perspective and language in children’s ability to delay gratification

Increasing psychological distance is an established method for improving children’s performance in a number of self-regulation tasks. For example, using a delay of gratification (DoG) task, Prencipe and Zelazo (Psychological Science, 2005, Vol. 16, pp. 501–505) showed that 3-year-olds delay more for “other” than they do for “self,” whereas 4-year-olds make similar choices for self and other. However, to our knowledge, no work has manipulated language to increase psychological distance in children. In two experiments, we sought to manipulate psychological distance by replicating Prencipe and Zelazo’s age-related findings and extending them to older children (Experiment 1) and also sought to manipulate psychological distance using the auxiliary verbs “want” and “should” to prime more impulsive preference-based decisions or more normative optimal decisions (Experiment 2). In Experiment 1, 96 3- to 7-year-olds showed age-related improvements and interactive effects between age and perspective on DoG performance. In Experiment 2, 132 3- to 7-year-olds showed age-related improvements and a marginal interaction between age and perspective on DoG performance, but no effect of auxiliary verbs was detected. Results are discussed in terms of differing developmental trajectories of DoG for self and other due to psychological distancing, and how taking another’s perspective may boost DoG in younger children but not older children.

Can the current hypodontia care pathway promote shared decision-making?

To determine the extent to which the current care pathway in hypodontia promotes shared decision-making (SDM). Exploratory cross-sectional study using qualitative methods. Orthodontic department of two NHS teaching hospitals in Yorkshire. Young people aged 12-16 years with hypodontia of any severity and at any stage of treatment, and their parents and guardians. (1) Observation and audio-recording of interdisciplinary consultation in hypodontia clinics (n = 5) without any researcher interference; (2) short, structured interviews with young people with hypodontia (n = 8) and their parent (n = 8) using a topic guide to explore themes around decision-making. Audio-recordings were transcribed and analysed using a thematic framework. Consultations were used as an opportunity for interdisciplinary discussion, information provision and treatment planning. Evidence of good communication was observed but patient engagement was low. The decision to be made was usually stated and treatment options discussed, but time constraints limited the scope for adequate information exchange and assessment of understanding. No methods were used to establish patient and family preferences or values. Interviews suggested parents expect the dental team to make decisions and young people rely on parental advocacy. Despite little evidence of SDM, participants reported satisfaction with their treatment. The current care pathway for hypodontia does not support clinicians in the steps of SDM. Recommendations for improving SDM processes include support to identify preference-based decisions, greater access to comprehensive and accessible patient information to enable preparation for consultation, alternative methods for effective communication of complex information and use of preference elicitation tools to aid value-driven decision-making.

Efficient coding of subjective value.

Preference-based decisions are essential for survival, for instance when deciding what we should (not) eat. Despite their importance, preference-based decisions are surprisingly variable and can appear irrational in ways that have defied mechanistic explanations. Here we propose that subjective valuation results from an inference process that accounts for the structure of values in the environment and that maximizes information in value representations in line with demands imposed by limited coding resources. A model of this inference process explains the variability in both subjective value reports and preference-based choices, and predicts a new preference illusion that we validate with empirical data. Interestingly, the same model explains the level of confidence associated with these reports. Our results imply that preference-based decisions reflect information-maximizing transmission and statistically optimal decoding of subjective values by a limited-capacity system. These findings provide a unified account of how humans perceive and valuate the environment to optimally guide behavior.

Estimating an Individual’s Probability of Revision Surgery After Knee Replacement: A Comparison of Modeling Approaches Using a National Data Set

Tools that provide personalized risk prediction of outcomes after surgical procedures help patients make preference-based decisions among the available treatment options. However, it is unclear which modeling approach provides the most accurate risk estimation. We constructed and compared several parametric and nonparametric models for predicting prosthesis survivorship after knee replacement surgery for osteoarthritis. We used 430,455 patient-procedure episodes between April 2003 and September 2015 from the National Joint Registry for England, Wales, Northern Ireland, and the Isle of Man. The flexible parametric survival and random survival forest models most accurately captured the observed probability of remaining event-free. The concordance index for the flexible parametric model was the highest (0.705, 95% confidence interval (CI): 0.702, 0.707) for total knee replacement and was 0.639 (95% CI: 0.634, 0.643) for unicondylar knee replacement and 0.589 (95% CI: 0.586, 0.592) for patellofemoral replacement. The observed-to-predicted ratios for both the flexible parametric and the random survival forest approaches indicated that models tended to underestimate the risks for most risk groups. Our results show that the flexible parametric model has a better overall performance compared with other tested parametric methods and has better discrimination compared with the random survival forest approach.

A Research Domain Criteria (RDoC) approach to Gambling Disorder: focus on preference-based decision-making and response inhibition

A Research Domain Criteria (RDoC) approach to Gambling Disorder: focus on preference-based decision-making and response inhibition

“They Should Be Asking Us”: A Qualitative Decisional Needs Assessment for Women Considering Cervical Cancer Screening

In this study, we examine from multiple perspectives, women’s shared decision-making needs when considering cervical screening options: Pap testing, in-clinic human papillomavirus (HPV) testing, self-collected HPV testing, or no screening. The Ottawa Decision Support Framework guided the development of the interview schedule. We conducted semi-structured interviews with seven screen-eligible women and five health care professionals (three health care providers and two health system managers). Women did not perceive that cervical screening involves a “decision,” which limited their knowledge of options, risks, and benefits. Women and health professionals emphasized how a trusted primary care provider can support women making a choice among cervical screening modalities. Having all cervical screening options recommended and funded was perceived as an important step to facilitate shared decision making. Supporting women in making preference-based decisions in cervical cancer screening may increase screening among those who do not undergo screening regularly and decrease uptake in women who are over-screened.

Clinical risk score to predict likelihood of recurrence after ductal carcinoma in situ treated with breast-conserving surgery

A majority of women with ductal carcinoma in situ (DCIS) receive breast-conserving surgery (BCS) but then face a risk of ipsilateral breast tumor recurrence (IBTR) which can be either recurrence of DCIS or invasive breast cancer. We developed a score to provide individualized information about IBTR risk to guide treatment decisions. Data from 2762 patients treated with BCS for DCIS at centers within the National Comprehensive Cancer Network (NCCN) were used to identify statistically significant non-treatment-related predictors for 5-year IBTR. Factors most associated with IBTR were estrogen-receptor status of the DCIS, presence of comedo necrosis, and patient age at diagnosis. These three parameters were used to create a point-based risk score. Discrimination of this score was assessed in a separate DCIS population of 301 women (100 with IBTR and 200 without) from Kaiser Permanente Northern California (KPNC). Using NCCN data, the 5-year likelihood of IBTR without adjuvant therapy was 9% (95% CI 5-12%), 23% (95% CI 13-32%), and 51% (95% CI 26-75%) in the low, intermediate, and high-risk groups, respectively. Addition of the risk score to a model including only treatment improved the C-statistic from 0.69 to 0.74 (improvement of 0.05). Cross-validation of the score resulted in a C-statistic of 0.76. The score had a c-statistic of 0.67 using the KPNC data, revealing that it discriminated well. This simple, no-cost risk score may be used by patients and physicians to facilitate preference-based decision-making about DCIS management informed by a more accurate understanding of risks.