
Editorial
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Shared decision making is widely endorsed as the gold standard for patient-centered care, yet in the context of cancer, patients often describe surgery as a nonchoice. This narrative review explores the concept of patient-perceived nonchoice decision making in cancer surgery.
This narrative review was guided by the Scale for the Assessment of Narrative Review Articles (SANRA) criteria. Studies examining nonchoice surgical decision making in adult patients with resectable solid-organ malignancies were identified through manual screening, citation searching, and a targeted PubMed search. Descriptive themes were developed through inductive analysis and iterative discussions among authors. Findings were synthesized using a structured narrative approach.
Seventeen studies met inclusion criteria. Three themes emerged: 1) surgery as the only choice offered by the surgeon, 2) choosing surgery did not feel like a choice, and (3) patient preference to relinquish decision making. According to patients, surgery was often framed as the sole viable treatment option with minimal discussion of alternatives. External social and societal pressures, combined with the belief that surgery equated to survival, further reinforced this perception. Patients who felt overwhelmed or had little medical knowledge often chose to relinquish decision-making responsibility. Collectively, these dynamics limited patients’ ability to engage in meaningful deliberation.
Despite the emphasis on shared decision making in cancer care, many patients undergoing surgery for resectable solid-organ malignancy face constrained decision making shaped by clinical realities, social context, and psychological stressors. Addressing the perception of surgery as a nonchoice is critical to promote meaningful patient engagement. Future research should aim to identify and mitigate modifiable factors that contribute to nonchoice mindsets, ultimately supporting value-concordant surgical decisions.
Many patients with cancer perceive surgery as their only option, rather than an active decision.
Surgeons often frame surgery for cancer as inevitable, limiting discussions of alternatives and undermining shared decision making.
Even when surgeons explicitly present surgical and nonsurgical options to patients, many patients still do not perceive a choice.
Some patients intentionally defer decision making to surgeons, either out of trust in clinical expertise or a desire to avoid the emotional burden of choice.
Understanding how nonchoice dynamics arise can help clinicians better support informed, values-based surgical decisions.
Pediatric shared decision making (SDM) involves clinicians working with children and families to make health care decisions that reflect their values and preferences. Existing pediatric SDM programs are highly variable and rely on frameworks designed for adults. While efforts have been made to identify SDM competencies in adult care, this has not happened in pediatrics.
To establish consensus-based core competencies enabling clinicians to effectively implement SDM with pediatric patients and their families.
We conducted a modified Delphi study with pediatric clinicians, SDM researchers, ethicists, and medical educators. In round 1, panelists listed essential SDM competencies. In rounds 2 and 3, panelists rated the importance of each competency using a 4-point Likert scale. Consensus was defined as ≥80% of panelists rating an item as “important” or “very important,” a median score ≥3.5, and interquartile range ≤1.
Forty professionals were invited; 22 panelists participated in round 1, suggesting 176 competencies, which were merged with 170 from prior literature. After refinement, 42 competencies were rated in round 2 (
This study defines the knowledge, skills, values, and attitudes pediatric health care professionals need to engage children and families in SDM effectively. The framework supports competency-based education and guides curriculum development and assessment to strengthen SDM practice in pediatrics.
This study is the first to develop pediatric-specific SDM competencies using a Delphi approach.
The final list includes 32 competencies across knowledge, skills, attitudes, and values.
These competencies provide a foundation for designing SDM training within a competency-based education approach in pediatrics.
Time-to-event outcomes from randomized controlled trials (RCTs) are often communicated without clearly conveying how treatment effects evolve over time. This can limit clinicians’ ability to interpret results and support patient decision making.
We conducted an online experiment with 250 German general practitioners in April 2024. Participants evaluated treatment effects presented in 4 common formats: hazard ratios, prolongation of life, restricted mean survival time (RMST), and absolute risk reduction. We assessed 1) understanding, defined as the ability to correctly compare effect sizes (small, medium, large), and 2) acceptability of each format. We also tested whether providing baseline risk information (control group outcomes) improved performance.
Participants’ effectiveness ratings did not differ between small, medium, and large treatment effects in any format. RMST presentations were judged less effective but more acceptable than the other formats. Providing baseline risk information did not influence effectiveness ratings or acceptance.
The use of a convenience sample may limit generalizability.
General practitioners struggled to interpret time-to-event treatment effects across all formats. Although RMST was preferred, no format supported accurate understanding of effect size.
Current approaches may not adequately support communication of time-to-event outcomes in clinical practice. More effective strategies are needed, likely combining absolute time-based measures with clear contextual information such as baseline risk.
Time-to-event outcomes from randomized trials are difficult for clinicians to interpret.
General practitioners were unable to distinguish between small, medium, and large treatment effects across formats.
Restricted mean survival time was preferred but did not improve understanding of time-to-event effects.
Current formats do not support communication of time-to-event outcomes in clinical decision making.
As an increasing number of oncology drugs are licensed for multiple indications, sharing information across indications may help improve the precision of estimates for a target indication where evidence may be immature. Visualizing the accumulation of evidence and its characteristics across all indications can help inform policy makers as to whether multi-indication synthesis methods should be considered and guide expert elicitation on appropriate cross-indication assumptions.
The multi-indication oncology drug bevacizumab was selected as a case study. We used visualization methods including timeline, ridgeline, and split-violin plots to display evidence and synthesis results across 7 licensed cancer types, focusing on the evidence on overall and progression-free survival and the display of results from models with and without information sharing.
The proposed displays allow for visualization of key characteristics of the evidence to support the assessment of heterogeneity within and across indications and inform the feasibility of information-sharing models.
The lack of consistent reporting of data in trial reports limits the visualization of some study characteristics. Tradeoffs between plot readability and the level of detail to include were required.
Clear graphical representations of the evolution and accumulation of evidence and synthesis results can provide a better understanding of the entire multi-indication evidence base, which can inform judgments regarding the appropriate use of data within and across indications. Interactive plots could help overcome some of the current limitations.
The proposed displays should be used to facilitate discussion with experts on the judgments required to assess the feasibility of using information-sharing methods to improve the estimation of relative treatment effects in evidence synthesis approaches and health technology assessment.
An increasing number of oncology drugs are licensed for multiple indications; we developed visualization methods for multi-indication evidence that consider key characteristics unique to oncology.
Graphical displays can be used to show the evolution of evidence within and across multiple indications.
Clear evidence visualizations can be used as a tool to support evidence synthesis approaches, support policy makers, or guide expert elicitation.
Medical providers often face challenges in accurately predicting the survival of critically sick patients. Optimistic forecasts can lead to the overuse of resources, while overly cautious predictions might restrict treatments. This study examines the role of specific psychological factors, analyzed realistically and holistically, in predicting survival outcomes for intensive care unit patients.
This single-center cohort study evaluated health care providers (e.g., physicians, residents and fellows, and advanced practice practitioners) using two 7-d clinical vignettes. Providers assessed the need for mechanical ventilation (MV), renal replacement therapy (RRT), a percutaneous endoscopic gastrostomy (PEG) tube, or palliative care. Psychological factors were measured using scales that assessed ambiguity tolerance, rationality versus emotional defensiveness, anxiety related to uncertainty, decision-making style, and risk taking. These psychological traits were analyzed using a more realistic and holistic approach, employing cluster techniques. Providers also determined whether they had enough information to evaluate the patient’s condition and compared their survival estimates to APACHE II scores.
In general, engagement in MV and RRT was common by day 2, although physicians were significantly less likely to recommend RRT. Providers generally suggested starting a palliative care consultation by day 6, with a noticeable shift on day 4. Three distinct composite psychological groups emerged: optimistic denial individuals (ODI), optimistic providers (OP), and resilient providers (RP). While these composite psychological groups did not significantly influence engagement in mechanical therapies, they did affect palliative care decisions: RP were more likely to request palliative care, whereas ODI were much less likely to do so. In contrast, individual psychological traits had nonsignificant correlations with the decision to use therapies. Providers initially overestimated survival probabilities during the first 3 d compared with APACHE II survival estimates. However, after day 4, this trend reversed, with providers becoming significantly more pessimistic versus the predictive score and increasingly requesting palliative care involvement.
Providers’ psychological profiles, rather than their clinical experience, significantly influenced decisions about organ-support therapies and palliative care. Survival estimates showed a biphasic pattern: initially, providers overestimated survival compared with APACHE II predictions, then became more pessimistic and more likely to consult palliative care after day 4.
Intensive care unit survival predictions by providers followed a biphasic pattern: optimistic early on, then increasingly pessimistic after day 4.
Psychological traits such as denial and ambiguity tolerance influenced palliative care decisions more than clinical experience did.
Resilient providers were more likely to initiate timely palliative care, while denial-prone providers delayed it.
Clinicians and critical care teams should be aware of how their psychological makeup can affect patient care decisions and outcomes.
The role of shared decision making (SDM) has become increasingly pivotal, particularly in nuanced choices such as those involving implantable cardioverter–defibrillator (ICD) therapy. This study evaluates the impact of the Dutch ICD Decision Aid on SDM in patients up for ICD implantation or replacement.
A stepped-wedge randomized controlled trial was conducted across 6 Dutch hospitals between February 2018 and September 2019, involving patients eligible for ICD implantation or pulse-generator exchange. SDM experiences of the patients and involved medical professionals were assessed using SDM-Q-9 and SDM-Q-Doc questionnaires, respectively. The Decisional Conflict Scale (DCS) scores measured effective decision making. The intervention group received the decision aid on top of standard care.
A total of 150 patients and 233 health care providers were included in the study. For health care providers, SDM scores did not differ: the SDM-Q-Doc median score was 36 (28–38) in the control phase and 35 (33–40) in the intervention phase (
Although the Dutch ICD Decision Aid did not result in significant differences in SDM scores or levels of decisional conflict between patient groups, both measures remained consistently favorable overall. The decision aid still holds promise as a valuable resource. Efforts should focus on refining decision-making tools and improving patient knowledge and the quality of patient-centered care.
A digital decision aid did not significantly increase shared decision-making (SDM) scores for patients and health care providers, as SDM levels were already high across all groups.
Despite high SDM scores, patient knowledge about implantable cardioverter–defibrillator (ICD) therapy remained low, highlighting a gap in understanding.
Patients with higher education or prior experience with ICDs demonstrated better knowledge retention, indicating the need for tailored educational interventions.
The study emphasizes the ongoing challenge of ensuring unbiased, well-informed decision making in ICD therapy, especially during pulse-generator replacements.
Concordance, or alignment of care with patients’ preferences, is a key component of high-quality decision making. Some patients may not have a clear preference, and others may not receive care aligned with their preference—both situations indicating a lack of concordance. The reasons behind these situations remain poorly understood. This study explores the reasons for lack of concordance in colorectal cancer screening among older adults.
Interviews were conducted with 160 older adults from the Promoting Informed Decisions About Colorectal Cancer Screening in Older Adults trial (NCT03959696) who did not meet the criteria for concordance. A thematic analysis of 152 analyzable interviews was performed to explore reasons for lack of concordance.
Four themes summarize the different reasons for the lack of concordance: 1) provider discussion and the need for more guidance (e.g., patients reported very limited discussion and desire for more information), 2) age-related considerations (e.g., patients acknowledge that at their age, screening may no longer be needed), 3) changes in health condition (e.g., patients report other health issues that take priority over screening), and 4) the impact of COVID-19 and practical barriers (e.g., patients report a desire to avoid hospitals and procedures).
The lack of concordance stemming from limited discussion, guidance, or lack of clear preference signal low decision quality, whereas the lack of concordance from changing patient preferences over time has implications for timing of measurement. To improve concordance, patients need support to clarify their preferences as well as support to implement their preferred approach.
Limited provider discussion, age-related factors, changing health priorities, and COVID-19–related or practical challenges were identified as key contributors to lack of concordance.
Achieving high concordance will require helping patients clarify their preferences, strengthening shared decision making, and providing implementation support.
Researchers also need to be aware of evolving preferences and implications for timing of preference measurements.
Despite many women learning about endometriosis on social media, posts about the condition often fail to reflect current evidence. With the content and credibility of online health messages being found to influence behavioral intentions in other areas, this study aimed to explore how the format of endometriosis-related social media posts affects women’s intentions to get a laparoscopy for the diagnosis and treatment of endometriosis.
In this 2 × 2 × (2) online randomized controlled trial, Australian women aged 18 to 45 y who had no prior endometriosis diagnosis were randomly assigned to view 1 of 4 mock Instagram posts. Post content (personal anecdote v. nonnarrative, factual information) and source (high-credibility “World Health Organization” (WHO) account v. low credibility layperson account) varied across conditions. A within-subjects component investigated change in intention when participants were informed of new treatment guidelines.
A total of 1,473 women were included in the analysis. Instagram posts featuring an anecdote produced higher treatment-seeking intentions (mean difference [MD] = 0.22, 95% confidence interval [CI] = 0.04–0.39) and more favorable attitudes toward getting a laparoscopy compared with posts containing nonnarrative information (MD = 0.13, 95% CI = 0.01–0.25). While the WHO account was perceived as more credible (MD = 0.29, 95% CI = 0.17–0.41), there were no differences in intentions, perceived norms, or self-efficacy toward laparoscopy compared with the layperson account. Advising participants of new evidence regarding the limitations of laparoscopy reduced intentions to get the procedure (MD = 0.29, 95% CI = 0.21–0.37), irrespective of condition.
Findings demonstrate the power of anecdotes in shaping treatment preferences. Supplementing evidence-based information with personal anecdotes may ensure accurate yet engaging health information is used by online endometriosis communities to seek appropriate care.
Framing health information on Instagram as a personal anecdote increased women’s intentions to get a laparoscopy for the diagnosis and treatment of endometriosis.
We found few differences between high- and low-credibility sources.
Informing participants of new evidence and clinical guidelines reduced intentions across all conditions, potentially reflecting more informed decision making.
Alternative diagnostic labels for melanoma in situ may better reflect its lower risk (15-y survival of 98%) compared with invasive melanoma (10-y survival ranging from 98% for American Joint Committee on Cancer stage IA to 19% for stage IV).
Secondary analysis of an online randomized experiment in Australian adults without melanoma. Participants were randomized to a hypothetical diagnosis of “melanoma in situ (MIS)” (control), “low-risk melanocytic neoplasm,” or “low-risk melanocytic neoplasm, in situ” and completed a survey.
Perceived risk measures were future invasive melanoma and mortality risk (0%–100%), comparative risk, affective risk, and vulnerability (7-point Likert scales). Calculated risk measures were lifetime invasive melanoma risk (from participants’ risk factors) and melanoma mortality probability (Australian sex-/age-specific mortality rates).
An intention-to-treat analysis across randomized groups was performed, unadjusted and adjusted for covariates (linear regression models).
In total, 1,668 adults were recruited. Compared with MIS, perceived melanoma mortality risk was lower for low-risk melanocytic neoplasm (−10.4%, 95% confidence interval [CI]: −13.1% to −7.63%,
Diagnostic labels without the word “melanoma” reduced risk overestimation, supporting MIS relabeling to mitigate overdiagnosis harm by reflecting its largely indolent nature.
Trial registration: ANZCTR: 386943
Alternative diagnostic labels for melanoma in situ that do not include the word “melanoma” significantly decreased perceived risk compared with melanoma in situ.
Participants substantially overestimated their risk; alternative labels reduced this overestimation of perceived risk compared with calculated risk.
A new label for melanoma in situ may better communicate the lower risk of adverse outcomes for this lesion compared with invasive melanoma. This may reduce patient anxiety and allow for management decisions that align with their values and preferences.
To evaluate the clinical and cost-effectiveness of SHARE TO CARE (S2C), a complex intervention for hospital-wide, systematic implementation of shared decision making.
We analyzed clinical effectiveness, health care resource utilization, and implementation costs of S2C from the statutory health insurance perspective using a quasi-experimental difference-in-differences approach with evidence from the Department of Neurology. Clinical outcomes included inpatient hospital admissions, emergency department admissions, and rates of standard and advanced imaging procedures. Implementation costs comprised those related to the conception, development, process integration, ongoing support, and auditing of S2C. Health care utilization data covered inpatient and outpatient care, pharmaceuticals, therapeutic services, assistive devices, and nursing care. We conducted sensitivity analyses to account for uncertainties.
S2C was associated with a reduction in inpatient hospital admissions, emergency department admissions, and imaging rates in the intervention group. The cost analyses aligned with these findings, showing reduced total costs and health care resource utilization in the intervention group. Although none of the estimates reached the predefined thresholds for statistical significance, the primary analysis yielded weak evidence (
S2C has the potential to reduce emergency department admissions and overall health care costs from the statutory health insurance perspective. Further research should investigate generalizability, the timing of the treatment effect, and potential biases introduced by the COVID-19 pandemic. The demonstrated effects of shared decision making (SDM) have encouraged statutory health insurances in Germany to offer additional reimbursement for clinics certified under the S2C program. The S2C model illustrates how payers and providers can collaborate to facilitate the nationwide implementation of SDM.
The implementation of SHARE TO CARE (S2C) was associated with a statistically nonsignificant reduction in emergency department admissions after 1 y from the statutory health insurance perspective, based on data from the Department of Neurology.
The cost savings from reduced health care utilization outweighed the implementation costs, and despite not reaching statistical significance, the results support the potential cost-effectiveness of S2C.
S2C has the potential for nationwide implementation as a systematic form of shared decision making.
Future research should investigate the generalizability of the results to other health care settings.