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To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used.We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original research, opinion papers and reviews (strategy 2).From the 92 included papers, we identified 18 decision characteristics for which authors deemed SDM appropriate, including preference-sensitive, equipoise and decisions where patient commitment is needed in implementing the decision. SDM authors indicated limits to SDM, especially when there are immediate life-saving measures needed. We identified four decision characteristics on which authors of different papers disagreed on whether or not SDM is appropriate.The findings of this review show the broad range of decision characteristics for which authors deem SDM appropriate, the ambiguity of some, and potential limits of SDM.The findings can stimulate clinicians to (re)consider pursuing SDM in situations in which they did not before. Additionally, it can inform SDM campaigns and educational programs as it shows for which decision situations SDM might be more or less challenging to practice.

OBJECTIVE: To assess how patients prefer and perceive medical decision making, which factors are associated with their preferred and perceived decision-making roles, and whether observed involvement reflects patients' perceived role.METHODS: We asked 781 patients visiting a medical specialist from 18 different disciplines to indicate their preferred and perceived decision-making roles. Patient involvement in videotaped consultations was assessed with the OPTION5 instrument.RESULTS: Most patients preferred and perceived decision making as shared (SDM; 58% and 43%, respectively), followed by paternalistic (26% and 38%), and informative (16% and 15%). A large minority (n = 103, 21%) of patients preferring shared or informative decision making (n = 482) experienced paternalistic decision making. Mean (SD) OPTION5 scores were highest in consultations which patients perceived as informative (26.0 (19.7)), followed by shared (19.1 (17.2)) and lowest in paternalistic decision making (11.8 (13.4) p < 0.001).CONCLUSIONS: Most patients want to be involved in decision making. Patients perceive that the physician makes the decision more often than they prefer, and perceive more involvement in the decision than objective assessment by an independent researcher shows.PRACTICE IMPLICATIONS: A clearer understanding of patients' medical decision-making experiences is needed to optimize physician SDM training programmes and patient awareness campaigns.

Purpose Shared decision making calls for clinician communication strategies that aim to foster choice awareness and to present treatment options neutrally, such as by not showing a preference. Evidence for the effectiveness of these communication strategies to enhance patient involvement in treatment decision making is lacking. We tested the effects of 2 strategies in an online randomized video-vignettes experiment. Methods We developed disease-specific video vignettes for rheumatic disease, cancer, and kidney disease showcasing a physician presenting 2 treatment options. We tested the strategies in a 2 (choice awareness communication present/absent) by 2 (physician preference communication present/absent) randomized between-subjects design. We asked patients and disease-naïve participants to view 1 video vignette while imagining being the patient and to report perceived room for involvement (primary outcome), understanding of treatment information, treatment preference, satisfaction with the consultation, and trust in the physician (secondary outcomes). Differences across experimental conditions were assessed using 2-way analyses of variance. Results A total of 324 patients and 360 disease-naïve respondents participated (mean age, 52 ± 14.7 y, 54% female, 56% lower educated, mean health literacy, 12 ± 2.1 on a 3–15 scale). The results showed that choice awareness communication had a positive (Mpresent = 5.2 v. Mabsent = 5.0, P = 0.042, η2partial = 0.006) and physician preference communication had no (Mpresent = 5.0 v. Mabsent = 5.1, P = 0.144, η2partial = 0.003) significant effect on perceived room for involvement in decision making. Physician preference communication steered patients toward preferring that treatment option (Mpresent = 4.7 v. Mabsent = 5.3, P = 0.006, η2partial = 0.011). The strategies had no significant effect on understanding, satisfaction, or trust. Conclusions This is the first experimental evidence for a small effect of fostering choice awareness and no effect of physician preference on perceived room to participate in decision making. Physician preference steered patients toward preferring that option.

Introduction: Few studies have been conducted into how physicians use steering behaviour that may persuade patients to choose for a particular treatment, let alone to participate in a randomised trial. The aim of this study is to assess if and how surgeons use steering behaviour in their information provision to patients in their choice to participate in a stepped-wedge cluster randomised trial investigating an organ sparing treatment in (curable) oesophageal cancer (SANO trial). Materials and methods: A qualitative study was performed. Thematic content analysis was applied to audiotaped and transcribed consultations of twenty patients with eight different oncological surgeons in three Dutch hospitals. Patients could choose to participate in a clinical trial in which an experimental treatment of ‘active surveillance’ (AS) was offered. Patients who did not want to participate underwent standard treatment: neoadjuvant chemoradiotherapy followed by oesophagectomy. Results: Surgeons used various techniques to steer patients towards one of the two options, mostly towards AS. The presentation of pros and cons of treatment options was imbalanced: positive framing of AS was used to steer patients towards the choice for AS, and negative framing of AS to make the choice for surgery more attractive. Further, steering language, i.e. suggestive language, was used, and surgeons seemed to use the timing of the introduction of the different treatment options, to put more focus on one of the treatment options. Conclusion: Awareness of steering behaviour can help to guide physicians in more objectively informing patients on participation in future clinical trials.

Survival rates in pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases have improved due to advances in conditioning regimens, donor selection, and prophylaxis and treatment of infections and graft-versus-host disease. Insight into the long-term patient-reported outcomes (PROs) after pediatric HSCT for nonmalignant disease is lacking but essential for optimal shared decision making, counseling, and quality of care. The purpose of this research was to determine long-term patient-reported outcomes in allogeneic pediatric HSCT for nonmalignant diseases and to compare these results with Dutch reference data. This single-center cohort study evaluated PROs (PedsQL 4.0, PROMIS item banks), self- or proxy-reported, among patients at >= 2 years after pediatric allogeneic HSCT for nonmalignant disease. Mean scores were compared with those of the Dutch general population. Of 171 eligible patients, 119 participated, for a 70% response rate. The median patient age was 15.8 years (range, 2 to 49 years), and the median duration of follow-up was 8.7 years (range, 2 to 34 years). Indications for HSCT included inborn errors of immunity (n = 41), hemoglobinopathies (n = 37), and bone marrow failure (n = 41). Compared with reference data, significantly lower scores were found in adolescents (age 13 to 17 years) on the Total, Physical Health, and School Functioning PedsQL subscales. Significantly more Sleep Disturbance was reported in children (age 8 to 18 years). On the other hand, significantly better scores were seen on PROMIS Fatigue (age 5 to 7 years) and Pain Interference (age 8 to 18 years) and, in adults (age 19 to 30 years), on Depressive Symptoms and Sleep Disturbance. This study showed better or comparable very long-term PROs in patients after pediatric HSCT for nonmalignant diseases compared with the reference population. Children and adolescents seem to be the most affected, indicating the need for supportive care to prevent impaired quality of life and, more importantly, to amplify their long-term well-being. (c) 2022 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

Background. Decision making regarding adjuvant therapy for high-risk endometrial cancer is complex. The aim of this study was to determine patients' and clinicians' minimally desired survival benefit to choose chemoradiotherapy over radiotherapy alone. Moreover, influencing factors and importance of positive and negative treatment effects (i.e. attribute) were investigated.Methods. Patients with high-risk endometrial cancer treated with adjuvant pelvic radiotherapy with or without chemotherapy and multidisciplinary gynaecologic oncology clinicians completed a trade-off questionnaire based on PORTEC-3 trial data.Results. In total, 171 patients and 63 clinicians completed the questionnaire. Median minimally desired benefit to make chemoradiotherapy worthwhile was significantly higher for patients versus clinicians (10% vs 5%, p = 0.02). Both patients and clinicians rated survival benefit most important during decision making, followed by long-term symptoms. Older patients (OR 0.92 [95%CI 0.87 & ndash;0.97]; p = 0.003) with comorbidity (OR 0.34 [95% CI 0.12 & ndash;0.89]; p = 0.035) had lower preference for chemoradiotherapy, while patients with better numeracy skills (OR 1.2 [95%CI 1.05 & ndash;1.36], p = 0.011) and chemoradiotherapy history (OR 25.0 [95%CI 8.8 & ndash;91.7]; p < 0.001) had higher preference for chemoradiotherapy.& nbsp;Conclusions. There is a considerable difference in minimally desired survival benefit of chemoradiotherapy in high-risk endometrial cancer among and between patients and clinicians. Overall, endometrial cancer patients needed higher benefits than clinicians before preferring chemoradiotherapy.(c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).

Supplemental Digital Content is available in the text., Purpose Although shared decision making (SDM) is considered the preferred approach in medical decision making, it is currently not routinely used in clinical practice. To bridge the transfer gap between SDM training and application, the authors aimed to reach consensus on entrustable professional activities (EPAs) for SDM and associated behavioral indicators as a framework to support self-directed learning during postgraduate medical education. Method Using existing literature on SDM frameworks and competencies; input from an interview study with 17 Dutch experts in SDM, doctor–patient communication, and medical education; and a national SDM expert meeting as a starting point, in 2017, the authors conducted a modified online Delphi study with a multidisciplinary Dutch panel of 32 experts in SDM and medical education. Results After 3 Delphi rounds, consensus was reached on 4 EPAs—(1) the resident discusses the desirability of SDM with the patient, (2) the resident discusses the options for management with the patient, (3) the resident explores the patient’s preferences and deliberations, and (4) the resident takes a well-argued decision together with the patient. Consensus was also reached on 18 associated behavioral indicators. Of the 32 experts, 30 (94%) agreed on this list of SDM EPAs and behavioral indicators. Conclusions The authors succeeded in developing EPAs and associated behavioral indicators for SDM for postgraduate medical education to improve the quality of SDM training and the application of SDM in clinical practice. These EPAs are characterized as process EPAs for SDM in contrast with content EPAs related to diverse medical complaints. A next step is the implementation of the SDM EPAs in existing competency-based workplace curricula.

Introduction: Approximately 20% of older patients with breast cancer either present with metastatic disease or develop distant metastases after early breast cancer. The aims of this study were to assess the prevalence of psychosocial problems in older patients with metastatic breast cancer, and to assess longitudinal changes in functional status, psychosocial functioning, and quality of life.Methods: For this prospective cohort study, patients with metastatic breast cancer aged 70 years and older were recruited in four Dutch hospitals. A baseline geriatric assessment was performed evaluating somatic, functional and psychosocial domains. Self-administered questionnaires were performed at baseline, three and six months: the Groningen Activity Restriction Scale, Geriatric Depression Scale. Loneliness scale, Apathy scale, Distress Thermometer and EORTC-QLQ-C30. Longitudinal changes on these scales were assessed by performing crude and adjusted linear mixed models.Results: Of the 100 patients that were included and underwent a geriatric assessment, 85 patients completed the baseline self-administered questionnaires. Almost half of the patients (46%) had depressive symptoms, and up to 64% experienced distress. Apathy was present in 53%, and 36% experienced loneliness. Three- and six-month questionnaires were completed by 77 and 72 patients, respectively. Although a significant increase in loneliness between baseline and six months was seen, this size of this change was not clinically relevant. No other longitudinal changes were found.Conclusion: The prevalence of distress, depressive symptoms, apathy and loneliness in older patients with metastatic breast cancer is high. Timely detection, for which a geriatric assessment is effective, could potentially improve quality of life. (C) 2020 The Authors. Published by Elsevier Ltd.

Objective This study aimed to assess psychological functioning, quality of life, and regret about screening after a positive fecal immunochemical test (FIT) and subsequent colonoscopy, and to evaluate changes over time. Methods This is a prospective cohort study. Individuals aged 55 to 75 with a positive FIT that were referred for colonoscopy between July 2017 and November 2018, were invited to complete questionnaires related to psychological distress and health‐related quality of life at three predefined time points: before colonoscopy, after histopathology result notification, and after 6 months. Four questionnaires were used: the Psychological Consequences Questionnaire (PCQ), the six‐item Cancer Worry Scale (CWS), the Decision Regret Scale (DRS), and the 36‐item Short‐Form (SF‐36). Results A total of 1066 participants out of 2151 eligible individuals were included. Patients with cancer showed a significant increase in psychological dysfunction (P = .01) and cancer worry (P = .008) after colonoscopy result notification, and a decline to pre‐colonoscopy measurements after 6 months. In the no‐cancer groups, psychological dysfunction and cancer worry significantly decreased over time (P 25). A good global quality of life was reported in participants with no cancer. Conclusion Some psychological distress remains up to 6 months after colonoscopy in participants who tested false‐positive in the Dutch bowel cancer screening program.

Background Existing measures to assess shared decision making (SDM) have often been developed based on an ill‐defined underlying construct, and many assess physician behaviours only or focus on a single patient‐physician encounter. Objective To (a) develop a patient and a physician questionnaire to measure SDM in oncology and (b) determine their content validity and comprehensibility. Methods A systematic review of SDM models and an oncology‐specific SDM model informed the domains of the SDM construct. We formulated items for each SDM domain. Cancer patients and physicians rated content validity in an online questionnaire. We assumed a formative measurement model and performed online field‐testing in cancer patients to inform further item reduction. We tested item comprehension in cognitive interviews with cancer patients and physicians. Results We identified 17 domains and formulated 132 items. Twelve cancer patients rated content validity at item level, and 11 physicians rated content validity at domain level. We field‐tested the items among 131 cancer patients and conducted cognitive interviews with eight patients and five physicians. These phases resulted in the 15‐item iSHAREpatient and 15‐item iSHAREphysician questionnaires, covering 13 domains. Conclusions We thoroughly developed the iSHARE questionnaires. They both assess patient and physician behaviours and cover the entire SDM process rather than a single consultation.

Background The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was created of the effects of both the implementation of VBHC and the implementation strategies used. Methods A scoping review was conducted by searching online databases for articles published between January 2006 and February 2021. Empirical as well as non-empirical articles were included. Results 1729 publications were screened and 62 were used for data extraction. The majority of the articles did not specify a conceptualization of VBHC, but only conceptualized the goals of VBHC or the concept of value. Most hospitals implemented only one or two components of VBHC, mainly the measurement of outcomes and costs or Integrated Practice Units (IPUs). Few studies examined effects. Implementation strategies were described rarely, and were evaluated even less. Conclusions VBHC has a high level of interpretative variability and a common conceptualization of VBHC is therefore urgently needed. VBHC was proposed as a shift in healthcare management entailing six reinforcing steps, but hospitals have not implemented VBHC as an integrative strategy. VBHC implementation and effectiveness could benefit from the interdisciplinary collaboration between healthcare and management science. Trial registration This scoping review was registered on Open Science Framework https://osf.io/jt4u7/ (OSF | The implementation of Value-Based Healthcare: a Scoping Review).

Background Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz’s value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model.

Contains fulltext : 282538.pdf (Publisher’s version ) (Open Access) BACKGROUND: There is a great need for the development of personalized prediction models (PPMs) that can predict the rate of disease progression for persons with Parkinson's disease (PD), based on their individual characteristics. In this study, we aimed to clarify the perspective of persons diagnosed with PD on the value of such hypothetical PPMs. METHODS: We organized four focus group discussions, each including five persons with PD who were diagnosed within the last 5 years. The sessions focused on what they think of receiving a personalized prediction; what outcomes are important to them; if and how the possibility of influencing the prognosis would change the way they think of personalized predictions; how they deal with the uncertainty from a PPM; and what barriers and facilitators they expect for using a PPM. RESULTS: The wish of persons with PD for receiving personalized prognostic information was highly heterogenous, for various reasons. Most persons with PD would like to receive more personalized prognostic information, mainly to better prepare themselves and their loved ones for the future. The prediction provided should be as personalized as possible, and there should be adequate supervision and coaching by a professional when providing the information. They were particularly interested in receiving prognostic information when their interventions would be available that could subsequently influence the identified prognostic factor and thereby affect the disease course beneficially. CONCLUSION: Most persons with PD in this study want more insight into their own future by means of prediction models, provided that this is explained and supervized properly by professionals. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers were involved in the study design, conduct of the study, interpretation of the data and in preparation of the manuscript.

BACKGROUND Shared decision-making (SDM) is particularly important in oncology as many treatments involve serious side effects, and treatment decisions involve a trade-off between benefits and risks. However, the implementation of SDM in oncology care is challenging, and clinicians state that it is difficult to apply SDM in their actual workplace. Training clinicians is known to be an effective means of improving SDM but is considered time consuming. OBJECTIVE This study aims to address the effectiveness of an individual SDM training program using the concept of deliberate practice. METHODS This multicenter, single-blinded randomized clinical trial will be performed at 12 Dutch hospitals. Clinicians involved in decisions with oncology patients will be invited to participate in the study and allocated to the control or intervention group. All clinicians will record 3 decision-making processes with 3 different oncology patients. Clinicians in the intervention group will receive the following SDM intervention: completing e-learning, reflecting on feedback reports, performing a self-assessment and defining 1 to 3 personal learning questions, and participating in face-to-face coaching. Clinicians in the control group will not receive the SDM intervention until the end of the study. The primary outcome will be the extent to which clinicians involve their patients in the decision-making process, as scored using the Observing Patient Involvement–5 instrument. As secondary outcomes, patients will rate their perceived involvement in decision-making, and the duration of the consultations will be registered. All participating clinicians and their patients will receive information about the study and complete an informed consent form beforehand. RESULTS This trial was retrospectively registered on August 03, 2021. Approval for the study was obtained from the ethical review board (medical research ethics committee Delft and Leiden, the Netherlands [N20.170]). Recruitment and data collection procedures are ongoing and are expected to be completed by July 2022; we plan to complete data analyses by December 2022. As of February 2022, a total of 12 hospitals have been recruited to participate in the study, and 30 clinicians have started the SDM training program. CONCLUSIONS This theory-based and blended approach will increase our knowledge of effective and feasible training methods for clinicians in the field of SDM. The intervention will be tailored to the context of individual clinicians and will target the knowledge, attitude, and skills of clinicians. The patients will also be involved in the design and implementation of the study. CLINICALTRIAL Netherlands Trial Registry NL9647; https://www.trialregister.nl/trial/9647 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/35543

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. Aim: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. Design: Exploratory inductive thematic analysis of 101 audio-recorded conversations. Setting/participants: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. Results: We identified eight relevant and distinct communicative behaviors. Doctors’ sequential communicative behaviors either reflected consistent approaches—a shared approach or a physician-driven approach—or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families’ decision-making preferences. Conclusions: Even though tailoring doctors’ communication to families’ preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors’ awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors’ skills in tactfully exploring families’ decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.

Objective: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients. Methods: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018. Results: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10—IQR 8–10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. Conclusion: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.

Summary Background Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate a prediction tool for 5-year recurrence, overall mortality, and other-cause mortality for older patients (aged ≥65 years) with early invasive breast cancer and to estimate individualised expected benefits of adjuvant systemic treatment. Methods We selected surgically treated patients with early invasive breast cancer (stage I–III) aged 65 years or older from the population-based FOCUS cohort in the Netherlands. We developed prediction models for 5-year recurrence, overall mortality, and other-cause mortality using cause-specific Cox proportional hazard models. External validation was performed in a Dutch Cancer registry cohort. Performance was evaluated with discrimination accuracy and calibration plots. Findings We included 2744 female patients in the development cohort and 13631 female patients in the validation cohort. Median age was 74·8 years (range 65–98) in the development cohort and 76·0 years (70–101) in the validation cohort. 5-year follow-up was complete for more than 99% of all patients. We observed 343 and 1462 recurrences, and 831 and 3594 deaths, of which 586 and 2565 were without recurrence, in the development and validation cohort, respectively. The area under the receiver-operating-characteristic curve at 5 years in the external dataset was 0·76 (95% CI 0·75–0·76) for overall mortality, 0·76 (0·76–0·77) for recurrence, and 0·75 (0·74–0·75) for other-cause mortality. Interpretation The PORTRET tool can accurately predict 5-year recurrence, overall mortality, and other-cause mortality in older patients with breast cancer. The tool can support shared decision making, especially since it provides individualised estimated benefits of adjuvant treatment. Funding Dutch Cancer Foundation and ZonMw.

Background Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate. Methods A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by telephone was evaluated. Results In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45, 58 and 60%, respectively. The response rates increased after a reminder by telephone to 62, 67 and 64%, respectively. A lower response rate was associated with lower level of education and longer time interval since last outpatient clinic visit. Conclusion The response rate for PRO varies by delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires.

The large variety in symptoms and treatment effects across different persons with Parkinson's disease (PD) warrants a personalized approach, ensuring that the best decision is made for each individual. We aimed to further clarify this process of personalized decision-making, from the perspective of medical professionals.We audio-taped 52 consultations with PD patients and their neurologist or PD nurse-specialist, in 6 outpatient clinics. We focused coding of the transcripts on which decisions were made and on if and how decisions were personalized. We subsequently interviewed professionals to elaborate on how and why decisions were personalized, and which decisions would benefit most from a more personalized approach.Most decisions were related to medication, referral or lifestyle. Professionals balanced clinical factors, including individual (disease-) characteristics, and non-clinical factors, including patients' preference, for each type of decision. These factors were often not explicitly discussed with the patient. Professionals experienced difficulties in personalizing decisions, mostly because evidence on the impact of characteristics of an individual patient on the outcome of the decision is unavailable. Categories of decisions for which professionals emphasized the importance of a more personalized perspective include choices not only for medication and advanced treatments, but also for referrals, lifestyle and diagnosis.Clinical decision-making is a complex process, influenced by many different factors that differ for each decision and for each individual. In daily practice, it proves difficult to tailor decisions to individual (disease-) characteristics, probably because sufficient evidence on the impact of these individual characteristics on outcomes is lacking.

Introduction Previous studies have shown that available tools such as ‘Adjuvant Online!” are not able to accurately predict the prognosis of patients aged 65 years or older with breast cancer. Furthermore, all available tools predict prognosis in terms of recurrence-free survival or overall survival, whilst the risk of other-cause mortality is often high in the older patient with breast cancer. This is highly relevant as it may influence treatment decisions. Patient characteristics such as comorbidity and various geriatric variables have shown to be predictive for these outcomes and could enhance the precision of prognostic tools for this target population. The objective of this study was to develop a prediction tool for recurrence, survival and other-cause mortality for older patients with breast cancer who received locoregional treatment, with incorporation of patient-, tumor- and geriatric variables. The tool additionally predicts expected benefits of systemic treatment. Methods Data from the large population-based FOCUS cohort was used, consisting of consecutive breast cancer patients in the South-Western part of the Netherlands, diagnosed between 1997 and 2004, aged 65 years and older. It contains detailed information on tumor characteristics, treatment, comorbidity and geriatric parameters. We developed a risk prediction model using a Cox proportional hazards regression model for overall survival and cause-specific Cox proportional hazards models for recurrence and other-cause mortality (defined as mortality without recurrence). The included predictors were derived from the PREDICT tool (consisting of age and various tumor variables), since this tool was previously shown to have the best performance in older adults so far. Predictors were complemented with comorbidity and geriatric variables. Discrimination accuracy was evaluated using time-dependent area under the curve (AUC). The potential annual benefit of chemotherapy was calculated assuming a relative risk of chemotherapy on recurrence of 0.7, derived from data from the most recent updates of the Early Breast Cancer Trialists’ Collaborative Group (EBCTCG). Additional benefit of endocrine treatment will be included in further development of the tool. Results A total of 2,744 patients were included for the initial development. For all patients, 5-year follow-up was complete with a high event-rate including 343 recurrences and 831 total deaths of which 586 without recurrence. The strongest predictors for overall survival and non-recurrence mortality were age (HR = 2.14, 95% CI: 1.89 - 2.43 and HR = 2.87, 95% CI: 2.46 - 3.35, respectively) and dementia (HR = 1.52, 95% CI: 1.16 - 1.99 and HR = 1.9, 95% CI: 1.49 - 2.65, respectively), and for recurrence, nodal status (HR = 1.80, 95% CI: 1.45 - 2.24) and tumor grade (HR = 2.96, 95% CI: 1.88 - 4.66). The time-dependent AUC at 5 years for recurrence-specific and other-cause mortality were 0.78 (95% CI: 0.76 - 0.81), and 0.75 (95% CI: 0.72 - 0.78), respectively. The AUC for overall survival was 0.75 (95% CI: 0.72 - 0.78). External validation is currently being performed in a large dataset retrieved from the national cancer registry (N= 13,631). These results will be presented during the symposium. Conclusion We have developed a model for predicting 5-year recurrence, other-cause mortality and overall survival, including expected benefits of adjuvant treatment, for older patients with breast cancer, with a good discrimination performance within a large-population based cohort. To our knowledge, this is the first model specifically designed for the older population, including competing risk as a predicted outcome and with incorporation of geriatric variables. Citation Format: Willeke van der Plas-Krijgsman, Daniele Giardiello, Hein Putter, Ewout W Steyerberg, Esther Bastiaannet, Anne M Stiggelbout, Simon P Mooijaart, Johanneke EA Portielje, Gerrit J Liefers, Nienke A de Glas. The PORTRET-tool: A prediction tool for older patients with breast cancer that predicts recurrence, survival and other-cause mortality [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS6-08.

Background Cancer services worldwide had to adapt in response to the COVID-19 pandemic to minimise risk to patients and staff. We aimed to assess the national impact of COVID-19 on the prescribing of systemic anticancer treatment in England, immediately after lockdown and after the introduction of new treatments to reduce patient risk. Methods We did a retrospective analysis using data from a central National Health Service England web database mandated for clinicians to register intention to start all new systemic anticancer treatments approved for use in England since 2016. We analysed the monthly number of treatment registrations in April, 2020, after the implementation of societal lockdown on March 23, 2020, and after implementation of treatment options to reduce patient risk such as oral or less immunosuppressive drugs, in May and June, 2020. We compared the number of registrations in April–June, 2020, with the mean number of registrations and SD during the previous 6 months of unaffected cancer care (September, 2019, to February, 2020). We calculated the percentage change and absolute difference in SD units for the number of registrations overall, by tumour type, and by type and line of therapy. Findings In April, 2020, 2969 registrations were recorded, representing 1417 fewer registrations than in the control period (monthly mean 4386; 32% reduction, absolute difference 4·2 SDs, p

Objective: To assess the numerical probabilities that individuals associate with frequently-used verbal labels relating to treatment outcomes and their association with medical context, age, gender, educational level, health literacy, and numeracy.Methods: Verbal labels (N = 11) were extracted from N = 90 audiotaped decision encounters in oncology. Three hundred Dutch adults, as proxies for newly-diagnosed cancer patients, assigned numerical probabilities to the labels in the context of cancer recurrence or nausea, and completed questions on their socio-demographic characteristics, health literacy and numeracy.Results: We found considerable variation in how individuals interpreted the verbal labels. Participants' probability estimates of verbal labels was lower in the context of (the more serious) cancer recurrence compared to (less serious) nausea. Lower numerate participants differentiated less between labels. There was no association between participants' estimates and age, gender, educational level or health literacy.Conclusion: There is considerable variation in how individuals interpret verbal labels frequently-used in decision encounters. Individuals seem to take base rates and severity of outcomes into account. Verbal labels may be less helpful to lower numerate individuals.Practice implications: To minimize misinterpretation and to improve patient-clinician decision making about health and care, we recommend to avoid the use of verbal labels only. (C) 2019 Elsevier B.V. All rights reserved.

Pre-test counseling about multigene panel testing involves many uncertainties. Ideally, counselees are informed about uncertainties in a way that enables them to make an informed decision about panel testing. It is presently unknown whether and how uncertainty is discussed during initial cancer genetic counseling. We therefore investigated whether and how counselors discuss and address uncertainty, and the extent of shared decision-making (SDM), and explored associations between counselors’ communication and their characteristics in consultations on panel testing for cancer. For this purpose, consultations of counselors discussing a multigene panel with a simulated patient were videotaped. Simulated patients represented a counselee who had had multiple cancer types, according to a script. Before and afterwards, counselors completed a survey. Counselors’ uncertainty expressions, initiating and the framing of expressions, and their verbal responses to scripted uncertainties of the simulated patient were coded by two researchers independently. Coding was done according to a pre-developed coding scheme using The Observer XT software for observational analysis. Additionally, the degree of SDM was assessed by two observers. Correlation and regression analyses were performed to assess associations of communicated uncertainties, responses and the extent of SDM, with counselors’ background characteristics. In total, twenty-nine counselors, including clinical geneticists, genetic counselors, physician assistants-in-training, residents and interns, participated of whom working experience varied between 0 and 25 years. Counselors expressed uncertainties mainly regarding scientific topics (94%) and on their own initiative (95%). Most expressions were framed directly (77%), e.g. We don’t know, and were emotionally neutral (59%; without a positive/negative value). Counselors mainly responded to uncertainties of the simulated patient by explicitly referring to the uncertainty (69%), without providing space for further disclosure (66%). More experienced counselors provided less space to further disclose uncertainty (p

Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types.Methods: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached.Results: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements.Conclusion: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders.Practice implications: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job. (C) 2019 Elsevier B.V. All rights reserved.

Introduction: Patient preferences are often not discussed in treatment decisions in oncology. We introduced an online values clarification method (VCM) to help newly diagnosed rectal cancer patients participate in shared decision making about short-course preoperative radiotherapy. Material and Methods: We offered a link to the VCM to a subset of consecutive patients before the pretreatment consultation with the radiation oncologist. Consultations were audiotaped and coded for expressions of patient preferences. Patients were asked to complete pre- and post-consultation questionnaires. Questionnaires assessed values clarity, decision regret and presence and impact of fecal incontinence and sexual problems. Results: Of 135 patients who had their consultation audiotaped and completed questionnaires, 35 received and accessed the VCM-link. Patients in the VCM-group slightly more often expressed preferences during consultations. Questionnaire data showed that patients in the VCM-group did not differ in how clear their values were, but experienced lower regret and less impact of treatment harms at 6 months follow-up; differences were non-significant but in the same direction at 12 months. Discussion: This is the first study to assess the effect of an adaptive conjoint analysis-based VCM on actual patient-clinician communication, and long-term decision regret and impact of treatment harms. Being explicitly invited to think about treatment benefits and harms seems to help patients to live with treatment consequences.

Background Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and their effects on daily life. Objectives This study assessed employment status, sick leave (absenteeism) and being less productive at work (presenteeism) in the long-term follow-up of VS patients, and evaluated the impact of treatment strategy (active surveillance, surgery or radiotherapy). Methods A cross-sectional survey study was performed in a tertiary university hospital in the Netherlands. Patients completed the iMTA-post productivity questionnaire (iPCQ). Employment status was compared to that of the general Dutch population. Employment, absenteeism and presenteeism were compared between patients under active surveillance, patients after radiotherapy and post-surgical patients. Result In total 239 patients participated, of which 67% were employed at the time of the study. Only 14% had a disability pension, which was comparable to the age-matched general Dutch population. The proportion of patients with absenteeism was 8%, resulting in a 4% reduction of working hours. Presenteeism was reported by 14% of patients, resulting in a 2% reduction of working hours. The median number of working hours per week was 36, and since the diagnosis, these hours had been reduced by 6%. There were no significant differences between treatment modalities. Conclusion On average, long-term employment status and working hours of VS patients are comparable to the age-matched general population. Treatment strategies do not seem to differentially impact on long-term employment of VS patients.

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology.Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients (N = 69) who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise.Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: (1) specifying the degree of uncertainty, (2) explaining reasons of uncertainty, (3) providing personalized estimates of uncertainty to patients, (4) downplaying or magnifying uncertainty, (5) reducing or counterbalancing uncertainty, and (6) providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their (7) choice of words/language to convey uncertainty (i.e., “I” vs. “we”; level of explicitness).Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may (un)consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these.

Objectives: Shared decision making (SDM) requires an active role from patients, which might be difficult for some. We aimed to identify what patients need to be ready (i.e., well-equipped and enabled) to participate in SDM about treatment, and what patient- and decision-related characteristics may influence readiness.Methods: We conducted semi-structured interviews with patients and professionals (physicians, nurses, general practitioners, and researchers). Interviews were analyzed inductively.Results: We identified five elements of patient readiness: 1) understanding of and attitude towards SDM, 2) health literacy, 3) skills in communicating and claiming space, 4) self-awareness, and 5) consideration skills. We identified 10 characteristics that may influence elements of readiness: 1) age, 2) cultural background, 3) educational background, 4) close relationships, 5) mental illness, 6) emotional distress, 7) acceptance of diagnosis, 8) clinician-patient relationship, 9) decision type, and 10) time.Conclusions: We identified a wide range of elements that may constitute patient readiness for SDM. Readiness might vary between and within patients. This variation may result from differences in patientand decision-related characteristics.Practice implications: Clinicians should be aware that not all patients may be ready for SDM at a given moment and may need support to enhance their readiness. (C) 2020 The Authors. Published by Elsevier B.V.

ObjectivesWe have developed two questionnaires to assess the shared decision making (SDM) process in oncology; the iSHAREpatient and iSHAREphysician. In this study, we aimed to determine: scores, construct validity, test-retest agreement (iSHAREpatient), and inter-rater (iSHAREpatient-iSHAREphysician) agreement.MethodsPhysicians from seven Dutch hospitals recruited cancer patients, and completed the iSHAREphysician and SDM-Questionnaire–physician version. Their patients completed the: iSHAREpatient, 9-item SDM-Questionnaire, Decisional Conflict Scale, Combined Outcome Measure for Risk communication And treatment Decision making Effectiveness, and Perceived Efficacy in Patient-Physician Interactions. We formulated, respectively, one (iSHAREphysician) and 10 (iSHAREpatient) a priori hypotheses regarding correlations between the iSHARE questionnaires and questionnaires assessing related constructs. To assess test-retest agreement patients completed the iSHAREpatient again 1-2 weeks later.ResultsIn total, 151 treatment decision making processes with unique patients were rated. Dimension and total iSHARE scores were high both in patients and physicians. The hypothesis on the iSHAREphysician and 9/10 hypotheses on the iSHAREpatient were confirmed. Test-retest and inter-rater agreement were >.60 for most items.ConclusionsThe iSHARE questionnaires show high scores, have good construct validity, substantial test-retest agreement, and moderate inter-rater agreement.Practice implicationsResults from the iSHARE questionnaires can inform both physician- and patient-directed efforts to improve SDM in clinical practice.

Uncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending on counselors’ communication styles. Ideally, the discussion of uncertainty enables counselees to cope with uncertainty and make well-informed decisions about testing. We examined the impact of how counselors convey uncertainty and address counselees’ uncertainty, and explored the role of individual characteristics. Therefore, a randomized controlled experiment using videos was conducted. Former counselees (N = 224) viewed one video depicting a genetic consultation about multigene panel testing. The extent of counselors’ communication of uncertainty (comprehensive vs. the essence) and their response to counselees’ uncertainty expressions (providing information vs. providing space for emotions vs. normalizing and counterbalancing uncertainty) were systematically manipulated. Individual characteristics, e.g., uncertainty tolerance, were assessed, as well as outcome variables (primary outcomes: feelings of uncertainty and information recall). No effects were found on primary outcomes. Participants were most satisfied when the essence was communicated, combined with providing information or providing space responses (p = 0.002). Comprehensive information resulted in less perceived steering toward testing (p = 0.005). Participants with lower uncertainty tolerance or higher trait anxiety were less confident about their understanding when receiving comprehensive information (p = 0.025). Participants seeking information experienced less uncertainty (p = 0.003), and trusted their counselor more (p = 0.028), when the counselor used information providing responses. In sum, the impact of discussing uncertainty primarily depends on individual characteristics. Practical guidelines should address how to tailor the discussion of uncertainty.

Background: Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate.Methods: A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by phone was evaluated. Results: In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45%, 58% and 60%, respectively. The response rates increased after a reminder by phone to 62%, 67% and 64%, respectively. A lower response rate was seen in association with a low level of education and longer time interval since last outpatient clinic visit.Conclusion: The response rate for PRO surveys is influenced by the delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires.

Purpose Solutions to improve the implementation of shared decision making (SDM) in oncology often focus on the consultation, with limited effects. In this study, we used a service design perspective on the care path of locally advanced pancreatic cancer (LAPC). We aimed to understand how experiences of patients, their significant others, and medical professionals over the entire care path accumulate to support their ability to participate in SDM. Participants and methods We used qualitative interviews including design research techniques with 13 patients, 13 significant others, and 11 healthcare professionals, involved in the diagnosis or treatment of LAPC. The topic list was based on the literature and an auto‐ethnography of the illness trajectory by a caregiver who is also a service design researcher. We conducted a thematic content analysis to identify themes influencing the ability to participate in SDM. Results We found four interconnected themes: (1) Decision making is an ongoing and unpredictable process with many decision moments, often unannounced. The unpredictability of the disease course, tumor response to treatment, and consequences of choices on the quality of life complicate decision making; (2) Division of roles, tasks, and collaboration among professionals and between professionals and patients and/or their significant others is often unclear to patients and their significant others; (3) It involves “work” for patients and their significant others to obtain and understand information; (4) In “their disease journey,” patients are confronted with unexpected energy drains and energy boosts, that influence their level of empowerment to participate in SDM. Conclusion The service design perspective uncovered how the stage for SDM is often set outside the consultation, which might explain the limited effect currently seen of interventions focusing on consultation itself. Our findings serve as a starting point for (re)designing care paths to improve the implementation of SDM in oncology., The service design perspective uncovered four interconnected themes. Our findings serve as a starting point for (re)designing care paths to improve the implementation of SDM in oncology.

__Objectives:__ The aim of this study was to assess the reliability, dimensionality and validity of the self-report questionnaire Health-Risk Attitude Scale (HRAS-13) in a sample of the general population and a patient population. __Methods:__ Sample 1 (_n_ = 930) was recruited from the general population aged 18–65 years in the Netherlands. Sample 2 (_n_ = 486) was recruited from the population of knee and hip osteoarthritis patients aged 45 and over, also from the Netherlands. Reliability was assessed using Cronbach’s alpha, average inter-item correlation and item-total correlations. Dimensionality was examined using confirmatory factor analysis (CFA), principal component analysis (PCA) and bifactor analysis. Validity was assessed by performing known-group analysis using ANOVA tests. __Results:__ Cronbach’s alphas of the HRAS-13 were 0.73 in sample 1 and 0.69 in sample 2. Reliability and dimensionality analyses differed slightly between the samples, and suggest that a short version of the HRAS may capture a general component of health-risk attitude. Validity assessment of known groups showed that the HRAS-13 and a likely HRAS-6 distinguished between subgroups of respondents based on most of the assessed characteristics, but not all. __Discussion:__ These findings are a preliminary indication that the HRAS-13 is a promising multidimensional instrument for measuring health-risk attitude. However, further research in various samples on decisions where health risks play a role is warranted to confirm the dimensionality of the HRAS-13 and the items to be retained in a full or a shorter version.

Background Both patients and physicians may choose to delay initiation of dopamine replacement therapy in Parkinson's disease (PD) for various reasons. We used observational data to estimate the effect of earlier treatment in PD. Observational data offer a valuable source of evidence, complementary to controlled trials. Method We studied the Parkinson's Progression Markers Initiative cohort of patients with de novo PD to estimate the effects of duration of PD treatment during the first 2 years of follow‐up, exploiting natural interindividual variation in the time to start first treatment. We estimated the Movement Disorder Society–Unified Parkinson's Disease Rating Scale (MDS‐UPDRS) Part III (primary outcome) and several functionally relevant outcomes at 2, 3, and 4 years after baseline. To adjust for time‐varying confounding, we used marginal structural models with inverse probability of treatment weighting and the parametric g‐formula. Results We included 302 patients from the Parkinson's Progression Markers Initiative cohort. There was a small improvement in MDS‐UPDRS Part III scores after 2 years of follow‐up for patients who started treatment earlier, and similar, but nonstatistically significant, differences in subsequent years. We found no statistically significant differences in most secondary outcomes, including the presence of motor fluctuations, nonmotor symptoms, MDS‐UPDRS Part II scores, and the Schwab and England Activities of Daily Living Scale. Conclusion Earlier treatment initiation does not lead to worse MDS‐UPDRS motor scores and may offer small improvements. These findings, based on observational data, are in line with earlier findings from clinical trials. Observational data, when combined with appropriate causal methods, are a valuable source of additional evidence to support real‐world clinical decisions. © 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society

Purpose In cases of small- to medium-sized vestibular schwannomas, three management strategies can be opted for: active surveillance, surgery or radiotherapy. In these cases, the patient’s preference is pivotal in decision-making. The aim of this study was to identify factors that influence a patient’s decision for a particular management strategy. Methods A qualitative inductive thematic analysis was performed based on semi-structured interviews. Eighteen patients with small- to medium-sized vestibular schwannomas were interviewed. All patients were diagnosed or treated at one of the two participating university medical centers in the Netherlands. Results Ten themes were identified that influenced the decision, classified as either medical or patient-related. The medical themes that emerged were: tumor characteristics, the physician’s recommendation, treatment outcomes and the perceived center’s experience. The patient-related themes were: personal characteristics, anxiety, experiences, cognitions, logistics and trust in the physician. Conclusion Knowledge of the factors that influence decision-making helps physicians to tailor their consultations to arrive at a true shared decision on vestibular schwannoma management.

Objective To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. Methods We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM-researchers. We asked, "If I say 'Doctors and patients making decisions together about cancer treatment,' what does this make you think about?" Ideas were further solicited by presenting 19 cards each describing a possible SDM element. Interviews were inductively coded and analysed, and the emerging themes were integrated into a model. Results The model that was based on participants' views assigns specific roles in SDM to both oncologists and patients. Oncologists determine possible treatments, emphasise the importance of patients' opinion, explain treatment options, get to know patients, guide patients, and provide treatment recommendations. Patients ask questions, express thoughts and feelings, consider options, offer opinions, and decide or delegate decisions to oncologists. Outside consultations, patients search for information, prepare questions, and consider options. Conclusions Next to oncologists' role, cancer patients also have a clear role in SDM about cancer treatment, during and outside consultations. Patients should receive the support they need to fulfil this requirement.