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Objectives: The aim of this study was to identify and prioritize aspects essential for decision making in patients with diffuse cutaneous systemic sclerosis (dcSSc) and to gain insight into information preferences of treatment options which could guide development of a leaflet for patients. Methods: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members. Results: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made. Conclusion: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information.

ObjectivesTailoring medical information to cancer patients’ needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here.MethodsA video-vignette experiment was used to systematically vary video patients’ information preferences (limited/extensive) and amount of provided information (additional/no additional). N = 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures.ResultsTailoring information to video patients’ preferences had no effect on APs’ evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs’ own information preferences: Those preferring extensive information recalled (MΔ = 5.8%) and recognized (MΔ = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information.ConclusionsTailoring to the amount of video patient’s information preferences did not affect APs’ evaluation of the consultation (satisfaction, trust), while APs’ personal information preferences determined their recall and recognition of medical information.Practice implicationsInformation preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented.

The global pandemic caused by severe acute respiratory syndrome coronavirus 2 has upended surgical practice. In an effort to preserve resources, mitigate risk, and maintain health system capacity, nonurgent surgeries have been deferred in many jurisdictions, with urgent procedures facing increasing wait times and unpredictability given potential future surges. Shared decision making, a process that integrates patient values and preferences with the scientific expertise of clinicians, may be of particular benefit during these unprecedented times. Aligning patient choices with their values, reducing unnecessary health care use, and promoting consistency between providers are now more critical than ever before. We review important aspects of shared decision making and provide guidance for its perioperative application during the coronavirus disease 2019 pandemic.

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.

Objective Shared decision making integrates health care provider expertise with patient values and preferences. The MAPPIN’SDM is a recently developed measurement instrument that incorporates physician, patient, and observer perspectives during medical consultations. This review sought to critically appraise the development, sensibility, reliability, and validity of the MAPPIN’SDM and to determine in which settings it has been used. Methods This critical appraisal was performed through a targeted review of the literature. Articles outlining the development or measurement property assessment of the MAPPIN’SDM or that used the instrument for predictor or outcome purposes were identified. Results Thirteen studies were included. The MAPPIN’SDM was developed by both adapting and building on previous shared decision making measurement instruments, as well as through creation of novel items. Content validity, face validity, and item quality of the MAPPIN’SDM are adequate. Internal consistency ranged from 0.91 to 0.94 and agreement statistics from 0.41 to 0.92. The MAPPIN’SDM has been evaluated in several populations and settings, ranging from chronic disease to acute oncological settings. Limitations include high reading levels required for self-administered patient questionnaires and the small number of studies that have employed the instrument to date. Conclusion The MAPPIN’SDM generally shows adequate development, sensibility, reliability, and validity in preliminary testing and holds promise for shared decision making research integrating multiple perspectives. Further research is needed to develop its use in other patient populations and to assess patient understanding of complex item wording.

Learning from each otherTo begin, our partnership conversations started dis-entangling some fundamental assumptions, strengths, and limitations of communication theory and methods as understood by members from the Health Communication Division of ICA and to connect those strengths to EACH. From a practical perspective, ICA members are Communication scholars and students who most often work in departments of Communication or Media, within Colleges of Arts, Humanities, and Social Sciences. In contrast, while some EACHRelational benefits of the partnershipOverall, we think the partnership between EACH and ICA will be beneficial to members of both organizations. EACH is a global organization dedicated to exploring and improving the ways in which healthcare professionals, patients, and family members communicate with one another. And while EACH focuses on many of the health communication issues that people in ICA examine, including public health communication, patients’ experiences with illness, shared decision-making, personalized healthPartnering opportunities at conferencesMark your calendars and look for a call for a co-sponsored panel to be included at the annual ICA conference in Paris in May 2022. The panel will focus on making connections for research partnerships. Beyond that, look for ongoing future opportunities on both organizations’ websites and your inbox.Also, the ICA Health Communication Division has adopted EACH’s Pairing with Colleagues Mentoring Program and we hope this partnership will strengthen opportunities for graduate students and earlyOrganizational benefits of the partnershipAs mentioned, EACH has chosen to become an affiliate organization to ICA to leverage common interests, perspectives, and expertise in communication in healthcare. At this point, formalizing the relationship translates into panel presentations at annual meetings shared across the organizations. Yet, we are working on how this formal relationship can be institutionalized in additional ways such that members benefit from membership in both organizations. Moreover, we are in conversation about

Importance Shared decision-making is a partnership between physicians and patients whereby patient values and preferences are incorporated with the best medical evidence. Shared decision-making may reduce decisional conflict, improve value-choice congruence, and increase patient involvement. Despite potential benefit in many key areas of otolaryngology-head and neck surgery, both clinical and research focuses on shared decision-making are scarce. Head and neck surgical oncology is of particular interest owing to the frequency by which preference-sensitive decisions must be made. Information used in this review was obtained between January 1 and February 1, 2020. Observations Various conceptual models have been developed in an attempt to define the concept of shared decision-making. More than 40 instruments have endeavored to measure the construct of shared decision-making. However, in head and neck surgery, few studies to date have explicitly done so. Situations of clinical equipoise, such as in the management of indeterminate thyroid nodules and in the treatment of laryngeal cancer, are frequent. In contrast, value-option incongruence may occur when patient values do not align with the most oncologically sound treatment choice, such as when the resection and reconstruction of oral cancer may leave patients with significant sequelae. Several patient decision aids have been developed to improve shared decision-making in specific clinical scenarios, for example, in considering total laryngectomy or primary chemoradiotherapy. Conclusions and Relevance Despite its potential benefit, there is a dearth of research and clinical applications of shared decision-making in head and neck surgery. Shared decision-making represents an area of substantial need in this regard, and additional efforts should be put forth.This narrative review discusses the concepts and development of tools to improve shared decision-making among patients who are undergoing head and neck surgery and surgeons.

Objectives: To gain insight into the experiences of patients with diffuse cutaneous systemic sclerosis during and after autologous hematopoietic stem cell transplantation. Methods: Semi-structured interviews were conducted with patients who underwent hematopoietic stem cell transplantation in four university hospitals in the Netherlands. Interviews were transcribed verbatim and thematically analyzed. Results: Nine male and seven female patients were interviewed, median age 47 years (range: 27–68). Patients mentioned their life was severely disrupted before hematopoietic stem cell transplantation and remained unsettled a long time after treatment. Uncertainty because of disease progression, loss of control over health and the sense of time and fear of treatment-related adverse events were common during hospitalization. After hematopoietic stem cell transplantation, patients experienced more physical limitations than they had expected, and recovery took longer and was mentally taxing. Going back to work and finding a new balance in personal relations and social life was complicated. Patients described various strategies to deal with challenges. Family and friends provided essential support, although many experienced a dwindling social circle. Most patients also appreciated peer support. All patients were satisfied with the low threshold for contact with physicians and nurses during hospitalization. However, aftercare focused on medical aspects rather than on psychological well-being and social issues. Moreover, patients would have preferred to be better prepared on what to expect after discharge, and lacked information about self-management, prognosis, optimal recovery, work, sexuality, and family planning. Conclusion: Hematopoietic stem cell transplantation has a major physical and psychological impact on patients with diffuse cutaneous systemic sclerosis. The course of recovery after this intensive therapy was unexpectedly long for some patients and offer of support was far less pro-active post-HSCT compared to pre-HSCT and during HSCT.

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.

Background Pancreatic cancer has a poor prognosis. Patients might be better able to cope with their disease when the information is discussed that they consider most important. We investigated what questions pancreatic patients consider most important to address in the first weeks after diagnosis. Methods We built a survey listing 84 questions and for each asked how important (range, 1–7) individuals who had received a certain or likely diagnosis of pancreatic cancer considered it that the question was addressed soon after diagnosis; patients who completed the survey 1 year or more after diagnosis were excluded. Mean perceived importance scores were used to rank order the questions in terms of importance. Results Forty-seven pancreatic cancer patients participated. The participants considered receiving an answer to a median of 53 (range, 21–83) questions as important (score = 6) or very important (score = 7). The number was not significantly related to gender, age, education, or time since diagnosis. For 42/84 questions, average score was ≥6.0. Topics considered most important included diagnosis, likelihood of cure, treatment options, harms and procedures, prognosis if the disease were left untreated, and quality of life. For 67/84 questions, ≥1 participants indicated that answering the question should be avoided (Md = 1 participant, range, 1–5) and for 77/84 questions that it was not applicable (Md = 3.5 participants, range, 1–30). Conclusions Pancreatic cancer patients consider a wide range of questions important to address after diagnosis, including those on sensitive topics. Doctors need to carefully dose information provision to avoid overloading patients. The findings can help to guide doctors and other information resources to provide relevant information to pancreatic cancer patients.

Background. Adjuvant systemic treatment for early stage breast cancer significantly reduces the risk of mortality but is associated with side effects, reducing patients’ quality of life. Decisions about adjuvant treatment are preference sensitive and are thus ideally suited to a shared decision making (SDM) approach. Whether and how SDM affects patients’ trust in their oncologist is currently unknown. We investigated the association between patients’ trust in their oncologist and 1) observed level of SDM in the consultation, 2) congruence between patients’ preferred and perceived level of participation, and 3) patient and oncologist characteristics. Methods. Decision consultations ( n = 101) between breast cancer patients and their medical oncologist were audio-recorded and transcribed verbatim. Patients’ trust in their oncologist was measured using the Trust in Oncologist Scale (TiOS). The observed level of SDM was scored using the 12-item Observing Patient Involvement In Decision Making scale (OPTION-12), preferred level of participation with the Control Preferences Scale, and perceived level of participation with an open question in telephonic interviews. Results. The average TiOS score was high overall (mean [SD] = 4.1 [.56]; range, 2.6–5.0). Low levels of SDM were observed (mean [SD] = 16 [11.6]; range, 2–56). Neither observed nor perceived level of participation in SDM was associated with trust. Patients’ preferred and perceived role in decision making was incongruent in almost 50% of treatment decisions. Congruence was not related to trust. A larger tumor size (β = 4.5, P = 0.03) and the use of a risk prediction model during the consultation (β = 4.1, P = 0.04) were associated with stronger trust. Conclusion. Patients reported strong trust in their oncologist. While low levels of SDM were observed, SDM was not associated with trust. These findings suggest it may not be necessary to worry about negative consequences for trust of using SDM or risk prediction models in oncological consultations. Considering the increased emphasis on implementing SDM, it is important to further explore how SDM affects trust in clinical practice.

Objectives To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT). Methods A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9). Results Twenty-five patients [16 male/nine female, median age 47 (range 27–68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49–100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as ‘the holy grail’. Conclusion This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients’ preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.

Background Autologous hematopoietic stem cell transplantation (HSCT) can induce long-term remission in patients with diffuse cutaneous systemic sclerosis (dcSSc). Nevertheless, it is an intensive treatment with risk of treatment-related mortality and associated adverse events requiring long-term hospital admission. Little is known about the psychosocial impact of HSCT on patients with dcSSc. Additionally, post-discharge care is currently not standardized. Objectives To gain more insight in the experiences of patients during and after HSCT and to identify unmet needs in current care. Methods Semi-structured interviews were conducted with dcSSc patients that underwent HSCT in four academic hospitals in the Netherlands. Interviews were transcribed verbatim and analyzed with NVIVO12. Results Eight patients were interviewed (5 males and 3 females, mean age 48 years (SD 10), mean disease duration 4.6 years (SD 1.9), mean time since HSCT 3.2 years (SD 2.4). At inclusion mean SHAQ was 1.3 (SD 1.1) and mean EQ5D-5L 0.86 (SD 0.21). While patients were satisfied with the frequent, low-threshold contacts with physicians and nurses, the decision-making process followed by HSCT and recovery was mentally taxing. Although patient education was experienced as extensive pre-treatment, participants reported they only felt the real impact of it during therapy. Patients felt anxious throughout the hospital stay and they could not recall most events from that period. Feelings of losing control over health and over time were frequently described. Support of family and friends was important during treatment. Apart from the practical aid, they provided emotional support, helping to cope with emotions and to find purpose. Furthermore, a specialized nurse involved in psychosocial support and care management was highly valued. Still, participants felt lonely and misunderstood due to invisible disabilities, such as fatigue and pain. After HSCT, patients experienced more physical limitations than they expected, i.e. low energy levels and limited hand function. They worried about contracting infections and relapse risk. Professional rehabilitation was often hindered. There were unmet needs. Patients preferred to be better informed about what to expect after admission. Structured and written instructions should include themes such as self-management, practical tips and prognosis of recovery. Participants would advise peers to keep a diary and even take photos during HSCT and hospital stay, in order to help recollect and assimilate past events. Peer-support was recommended by most patients. Conclusion HSCT had a large impact, both physical and emotional. We identified unmet needs regarding patient education on rehabilitation and psychosocial support in the period following HSCT. Disclosure of interests Carolijn de Bresser: None declared, Julia Spierings Grant/research support from: Boehringer ingelheim, Femke van Rhijn-Brouwer: None declared, arwen Pieterse: None declared, Madelon Vonk Grant/research support from: Madelon Vonk has received unrestricted research funds from actelion and therabel, Consultant for: Madelon Vonk was a consultant for actelion, Boehringer-Ingelheim, Speakers bureau: actelion, Boehringer-Ingelheim, Roche, alexandre Voskuyl: None declared, Jeska de Vries-Bouwstra: None declared, Marijke Kars: None declared, Jacob M. van Laar Grant/research support from: Genentech, Consultant for: F. Hoffmann-La Roche

Background:Diffuse cutaneous systemic sclerosis (dcSSc) has a high impact on quality of life and is associated with increased mortality. Several treatment options are available in dcSSc, including immunosuppressives, chemotherapy and hematopoietic stem cell transplantation. Shared decision making is key in choosing the appropriate treatment strategy. In earlier studies however, patients reported that the lack of accessible and reliable patient information about treatment options complicates decision making. In order to provide information that meets the needs of patients and addresses relevant benefits and harms, more insight in the preferences of patients is needed.Objectives:The aim of this study was to identify and prioritize aspects that should be addressed when informing patients with dcSSc about treatment options, from a patient’s perspective.Methods:A three-round Delphi study was conducted with a panel of patients with dcSSc. The first questionnaire was based on a systematic literature search regarding benefits and harms of the four main treatments in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide, and stem cell transplantation. In the first round, patients were asked to indicate which information on the benefits and harms is essential for making a treatment decision; they could also add new items. In the second and third rounds, patients were asked to prioritize the items. After the third round, a live, online panel discussion was held in order to reach consensus. Consensus was defined as ≥75% agreement among panel members.Results:Of the 36 patients invited, 67% (n=24) completed the first, 69% (n=25) the second and 75% (n=27) the third round. In the third round, median age of participants was 51 years (IQR 18), median disease duration was 4 years (IQR 5), 52% was female. Most patients had completed either an intermediate education level (59%) or high level of education (30%). Patients were or had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%). Seven percent of patients were treatment-naïve. After the third round, eight patients joined the online panel discussion to reach final consensus. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four adverse events (treatment-related mortality, viral infections, cardiac damage, increased risk of cancer) as key themes for the decision making process (Table 1).Conclusion:This study identified essential aspects of the four main treatment options for dcSSc. Our results can be used to develop effective patient information.Table 1.Agreement on benefits and harms that should be addressedBenefitsAgreementHarmsAgreementImproved pulmonary function100%Viral infections88%Improved skin thickness100%Cardiac damage88%Improved mobility100%Increased risk of cancer88%Prolonged progression-free survival95%*Treatment-related mortality79%*Improved quality of life77%*Flare or relapse of disease63%Improved daily functioning77%*Temporary increase in fatigue25%Reduced fatigue75%Temporary negative impact on social activities25%Improved hand function25%Nausea25%Improved mood25%Other autoimmune disease13%Improved cardiac function13%Hormonal imbalance13%Improved oesophageal function7%Concentration difficulty13%Diarrhea13%Erectile dysfunction13%Depression13%Infertility13%Hair loss13%*Items on which consensus was reached in round 3Disclosure of Interests:None declared

Objectives To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? Methods Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. Results The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. Conclusions It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.

ObjectivesTo (1) provide an up-to-date overview of shared decision making (SDM)-models, (2) give insight in the prominence of components present in SDM-models, (3) describe who is identified as responsible within the components (patient, healthcare professional, both, none), (4) show the occurrence of SDM-components over time, and (5) present an SDM-map to identify SDM-components seen as key, per healthcare setting.DesignSystematic review.Eligibility criteriaPeer-reviewed articles in English presenting a new or adapted model of SDM.Information sourcesAcademic Search Premier, Cochrane, Embase, Emcare, PsycINFO, PubMed, and Web of Science were systematically searched for articles published up to and including September 2, 2019.ResultsForty articles were included, each describing a unique SDM-model. Twelve models were generic, the others were specific to a healthcare setting. Fourteen were based on empirical data, 26 primarily on analytical thinking. Fifty-three different elements were identified and clustered into 24 components. Overall, Describe treatment options was the most prominent component across models. Components present in >50% of models were: Make the decision (75%), Patient preferences (65%), Tailor information (65%), Deliberate (58%), Create choice awareness (55%), and Learn about the patient (53%). In the majority of the models (27/40), both healthcare professional and patient were identified as actors. Over time, Describe treatment options and Make the decision are the two components which are present in most models in any time period. Create choice awareness stood out for being present in a markedly larger proportion of models over time.ConclusionsThis review provides an up-to-date overview of SDM-models, showing that SDM-models quite consistently share some components but that a unified view on what SDM is, is still lacking. Clarity about what SDM constitutes is essential though for implementation, assessment, and research purposes. A map is offered to identify SDM-components seen as key.Trial registrationPROSPERO registration CRD42015019740

ObjectiveMany treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations.DesignWe performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.SettingDutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.Participants14 CPG panel members.Main outcomesFor treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel’s benefits–harm trade-off underlying recommendation; and advice on patient involvement in decision-making.ResultsWe identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel’s preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time.ConclusionsThe motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

Objective To examine situations where shared decision making (SDM) in practice does not achieve the goal of a patient-centered decision. Methods We explore circumstances in which elements necessary to realize SDM – patient readiness to participate and understanding of the decision – are not present. We consider the influence of contextual factors on decision making. Results Patients’ preference and readiness for participation in SDM are influenced by multiple interacting factors including the patient’s comprehension of the decision, their emotional state, the strength of their relationship with the clinician, and the nature of the decision. Uncertainty often inherent in information can lead to misconceptions and ill-formed opinions that impair patients’ understanding. In combination with cognitive biases, these factors may result in decisions that are incongruent with patients’ preferences. The impact of suboptimal understanding on decision making may be augmented by the context. Conclusions There are circumstances in which basic elements required for SDM are not present and therefore the clinician may not achieve the goal of a patient-centered decision. Practice Implications A flexible and tailored approach that draws on the full continuum of decision making models and communication strategies is required to achieve the goal of a patient-centered decision.

Purpose: The aims of this study were to 1) describe preferred and experienced roles in treatment decision making among patients with localized prostate cancer, 2) identify how often the roles experienced by patients matched their preferred roles and 3) determine whether active involvement in decision making regardless of role preferences or concordance between preferred and experienced roles would be the strongest predictor of more favorable patient reported outcomes. Materials and Methods: In this prospective, multicenter, observational study we obtained serial questionnaire data from 454 patients with newly diagnosed, localized prostate cancer (cT1-cT2, or Gleason 7 or less and prostate specific antigen 20 ng/ml or less). Questionnaires were completed prior to treatment and at the 3, 6 and 12-month posttreatment followups. Clinical data were obtained from the patient medical records. Active involvement and role concordance were operationalized using the CPS (Control Preferences Scale). ANOVA and effect sizes (small and medium Cohen d = 0.2 and 0.5, respectively) were used to compare patient knowledge of prostate cancer, decision conflict, decision regret and overall health related quality of life. Results: Of the patients 393 (87%) reported having been actively involved in treatment decision making. However, 78 patients (17%) indicated having had less or more involvement than preferred. Active involvement was significantly associated with more prostate cancer knowledge (d = 0.30), less decision conflict (d = 0.52) and less decision regret (d = 0.34). Role concordance was also but less strongly associated with less decision conflict (d = 0.41). Conclusions: Our findings support a policy of encouraging all patients with localized prostate cancer regardless of their stated role preferences to be actively involved in the treatment decision.

Background Older patients are believed to prefer a more passive role in treatment decision making, but studies reporting this relation were conducted over a decade ago or were retrospective. We prospectively compared younger (40-64 years) versus older (≥ 65 years) breast cancer patients' preferences for decision-making roles and their perceived actual roles. Patients and Methods A prospective multicenter study was conducted in Leiden, The Hague, and Tilburg over a 2-year period. Early-stage breast cancer patients were surveyed about their preferred and perceived decision-making roles (active, shared, or passive) concerning surgery type (breast-conserving vs. mastectomy) (n = 74), adjuvant chemotherapy (aCT, n = 43), and adjuvant hormonal therapy (aHT, n = 39). Results For all decisions, both age groups most frequently preferred a shared role before consultation, except for decisions about aHT, for which younger patients more commonly preferred an active role. The proportion of patients favoring an active or passive role in each decision was lower for the older than the younger patients, but none of the differences was significant. Regarding perceived actual roles, both groups most frequently reported an active role in the surgical decision after consultation. In deciding about both aCT and aHT, a larger proportion of older patients perceived having had a passive role compared to younger patients, and a greater proportion of younger patients perceived having been active. Again, differences were not statistically significant. Conclusion Most older patients preferred to decide together with their clinician, but preferences varied widely. Older patients more often than younger patients perceived they had not been involved in decisions about systemic therapy. Clinicians should invite all patients to participate in decision making and elicit their preferred role.

The first step in shared decision making (SDM) is creating choice awareness. This is particularly relevant in consultations concerning preference-sensitive treatment decisions, e.g. those addressing (neo-)adjuvant therapy. Awareness can be achieved by explicitly stating, as the 'reason for encounter', that a treatment decision needs to be made. It is unknown whether oncologists express such reason for encounter. This study aims to establish: 1) if 'making a treatment decision' is stated as a reason for the encounter and if not, what other reason for encounter is provided; and 2) whether mentioning that a treatment decision needs to be made is associated with enhanced patient involvement in decision making. Consecutive first consultations with: 1) radiation oncologists and rectal cancer patients; or 2) medical oncologists and breast cancer patients, facing a preference-sensitive treatment decision, were audiotaped. The tapes were transcribed and coded using an instrument developed for the study. Oncologists' involvement of patients in decision making was coded using the OPTION-scale. Oncologists (N = 33) gave a reason for encounter in 70/100 consultations, usually (N = 52/70, 74%) at the start of the consultation. The reason for encounter stated was 'making a treatment decision' in 3/100 consultations, and 'explaining treatment details' in 44/100 consultations. The option of foregoing adjuvant treatment was not explicitly presented in any consultation. Oncologist' involvement of patients in decision making was below baseline (Md OPTION-score = 10). Given the small number of consultations in which the need to make a treatment decision was stated, we could not investigate the impact thereof on patient involvement. This study suggests that oncologists rarely express that a treatment decision needs to be made in consultations concerning preference-sensitive treatment decisions. Therefore, patients might not realize that foregoing (neo-)adjuvant treatment is a viable choice. Oncologists miss a crucial opportunity to facilitate SDM

Objective To assess the extent to which (1) clinicians, using or not using conversation aids, foster choice awareness during clinical encounters and (2) fostering choice awareness, with or without conversation aids, is associated with greater patient involvement in shared decision making (SDM). Patients and Methods We randomly selected 100 video-recorded encounters, stratified by topic and study arm, from a database of 10 clinical trials of SDM interventions in 7 clinical contexts: low-risk acute chest pain, stable angina, diabetes, depression, osteoporosis, and Graves disease. Reviewers, unaware of our hypothesis, coded recordings with the OPTION-12 scale to quantify the extent to which clinicians involved patients in decision making (SDM, 0-100 score). Blinded to OPTION-12 scale scores, we used a self-developed coding scale to code whether and how choice awareness was fostered. Results Clinicians fostered choice awareness in 53 of 100 encounters. Fostering choice awareness was associated with a higher OPTION-12 scale score (adjusted [for using vs not using a conversation aid] predicted mean difference, 20; 95% CI, 11-29). Using a conversation aid was associated with a higher, nonsignificant chance of fostering choice awareness (N=31 of 50 [62%] vs N=22 of 50 [44%]; adjusted [for trial] P =.34) and with a higher OPTION-12 scale score, although adjusting for fostering choice awareness mitigated this effect (adjusted predicted mean difference 5.8; 95% CI, −1.3-12.8). Conclusion Fostering choice awareness is linked to a better execution of other SDM steps, such as informing patients or discussing preferences, even when SDM tools are not available or not used.

The use of adjuvant chemotherapy and endocrine therapy for early stage breast cancer has substan-tially increased. The presentation of the Early Breast Cancer Trialists Collaborative Group (EBCTCG) meta-analyses of adjuvant systemic treatment effec-tiveness, late 1990s, led to a paradigm shift where adjuvant systemic treatment was no longer reserved for patients with (locally) advanced disease, but also became available to node negative patients [1]. New insights in prognostic factors and improvements in treatment have led to further easing of the eligibility criteria for adjuvant systemic treatment over time. For example, according to the American National Comprehensive Cancer Network (NCCN) breast cancer guidelines, some form of adjuvant systemic treatment could be considered for all breast cancer patients with invasive ductal or lobular tumors larger than 0.5 cm. If a patient has Her2-positive disease, adjuvant systemic treatment could also be consid-ered for tumors smaller than 0.5 cm [2]. Going by these NCCN and other (inter)national guidelines, a proportion of early stage breast cancer patients with a clinical indication for adjuvant systemic treatment have a potential overall survival benefi t of as little as 1% – conversely, 99% of these patients potentially only experience side effects and no survival gain. With the exception of patient subgroups deemed at high risk of recurrence and breast cancer mortality (e.g. Her2-positive patients or those 40 years or younger at diagnosis), the general rule of thumb applied in the Netherlands is that adjuvant systemic treatment is advised if treatment reduces the patient ’ s risk of breast cancer death by at least 4% (absolute). This easing of the eligibility criteria for adjuvant sys-temic treatment is also refl ected in the substantial increase in its use in Dutch clinical practice from 1990 – 2011. Whereas between 1990 and 1997 only 37% of early stage breast cancer patients received adjuvant systemic therapy, in 2011 an average of 70% of early stage breast patients received adjuvant systemic treatment [3,4]. In 2000, just after the pub-lication of the fi rst EBCTCG meta-analysis, a sur-vey amongst Dutch oncologists reported that the majority felt that adjuvant chemotherapy should minimally yield 6 – 10% overall survival benefi t to make it worthwhile for patients with node negative disease [5]. To date no studies have assessed what survival benefi t makes endocrine treatment worth-while according to oncologists. Yet, endocrine treat-ment duration has been extended more and more (from 2.5 to 5 years and an extension to 10 years is currently topic of debate), whilst studies show non-adherence and/or premature discontinuation of treatment of as much as 40% [6 – 8]. It has been over a decade since Stiggelbout et al. conducted their survey of oncologists ’ views on the survival benefi t that makes adjuvant chemotherapy

Background. Treatment decision making is often guided by evidence-based probabilities, which may be presented to patients during consultations. These probabilities are intrinsically imperfect and embody 2 types of uncertainties: aleatory uncertainty arising from the unpredictability of future events and epistemic uncertainty arising from limitations in the reliability and accuracy of probability estimates. Risk communication experts have recommended disclosing uncertainty. We examined whether uncertainty was discussed during cancer consultations and whether and how patients perceived uncertainty. Methods. Consecutive patient consultations with medical oncologists discussing adjuvant treatment in early-stage breast cancer were audiotaped, transcribed, and coded. Patients were interviewed after the consultation to gain insight into their perceptions of uncertainty. Results. In total, 198 patients were included by 27 oncologists. Uncertainty was disclosed in 49% (97/197) of consultations. In those 97 consultations, 23 allusions to epistemic uncertainty were made and 84 allusions to aleatory uncertainty. Overall, the allusions to the precision of the probabilities were somewhat ambiguous. Interviewed patients mainly referred to aleatory uncertainty if not prompted about epistemic uncertainty. Even when specifically asked about epistemic uncertainty, 1 in 4 utterances referred to aleatory uncertainty. When talking about epistemic uncertainty, many patients contradicted themselves. In addition, 1 in 10 patients seemed not to realize that the probabilities communicated during the consultation are imperfect. Conclusions. Uncertainty is conveyed in only half of patient consultations. When uncertainty is communicated, oncologists mainly refer to aleatory uncertainty. This is also the type of uncertainty that most patients perceive and seem comfortable discussing. Given that it is increasingly common for clinicians to discuss outcome probabilities with their patients, guidance on whether and how to best communicate uncertainty is urgently needed.

Aim Surgery for rectal and sigmoid cancer is a model setting for investigating preoperative information provision and shared decision making (SDM), as the decision consists of a trade-off between the pros and cons of different treatment options. The aim of this study was to explore surgeons' opinion on the preoperative information that should be given to rectal and sigmoid cancer patients and to evaluate what is actually communicated. In addition, we assessed surgeons' attitudes towards SDM and compared these with patient involvement. Method A questionnaire was sent to Dutch surgeons with an interest in gastroenterology. Preoperative consultations were recorded. A checklist was used to code the information that surgeons communicated to the patients. The OPTION-scale was used to measure patient involvement. Results Questionnaires were sent to 240 surgeons, and 103 (43%) responded. They stated that information on anastomotic leakage and its consequences, the benefits and risks of a defunctioning stoma and the impact of a stoma on quality of life were necessary preoperative information. In practice, patients were inconsistently informed of these items. Most participants agreed to using SDM in their consultations. However, in practice, most patients were offered only one treatment option and little SDM was seen. The mean OPTION-score was low (7/100). Conclusion Insufficient information is given to patients with rectal and sigmoid cancer to guide them on their preferred surgical option. Information should be given on all treatment options, together with their complications and outcome, before any decision is made.

Shared decision making works well even in this highly charged setting “Nothing about me without me”1 and “Really putting patients at the centre of healthcare”2 are just two expressions of the call for patient involvement and shared decision making. For many, shared decision making is becoming the norm, at least in preference sensitive decisions, but for others it is seen as just a fashionable phrase, to be followed by business as usual. Indeed, sharing decisions seems to occur to a fairly limited extent in daily practice.3 In a linked report of a noteworthy study involving patients at all stages from study design to publication, Hess and colleagues took up the challenge of supporting patient decision making in the emergency department (doi:10.1136/bmj.i6165).4 They show that even in this setting patients can be involved. With the implementation of a “quantitative pretest probability webtool” built into a decision aid for the clinical encounter, the authors more than doubled patient …

Introduction Most patients with a displaced midshaft clavicular fracture can be treated either operatively or nonoperatively, with similar long-term outcomes. The treatment choice depends on individual preferences, and is therefore suited for a shared decision making (SDM) approach. However, little is known about SDM in fracture treatment. The purpose of this study was to evaluate the current daily practice of shared decisional behaviour in clavicular fracture treatment, in order to assess the need for improvement and set a baseline level for future research. Patients and methods All consecutive adult patients treated in two hospitals for a displaced, midshaft clavicular fracture in 2015 filled out a questionnaire shortly after the decision making moment, that consisted of questions concerning their knowledge and preferences regarding the treatment options; the SDM-Q-9-NL to measure the perceived degree of SDM, and the Control Preferences Scale to measure patients’ preferred and actual roles in decision making. Results Fifty patients were included. Eighteen percent of the patients were unaware of the treatment options before the consultation, 48% had no preference for either treatment option. The mean score for perceived degree of SDM was 74 out of 100 (SD 23, range 12.5–100). In 68% of patients, the preferred role matched the actual role in making the decision. Sixteen patients (32%) would have preferred either a less (n = 8) or a more (n = 8) active role. Conclusion The patient-reported level of SDM in treatment decisions for clavicular fractures was high, but not all patients had the role in this process that they preferred. To improve patients’ involvement in the treatment decision making process for clavicular fractures, it is important to create general awareness about SDM, and increase knowledge of orthopaedic trauma surgeons about SDM behaviour.

Purpose To validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer. Methods We translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals. Results Of 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies. Conclusion We found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.

When deciding about the use of a defunctioning stoma in rectal cancer surgery, benefits and risks need to be weighed. This study investigated: (1a) factors associated with the use of defunctioning stomas; (1b) hospital variation; and (2) surgeons' perceptions regarding factors that determine this decision.Population-based data from the Dutch Surgical Colorectal Audit were used. Factors for receiving a defunctioning stoma were analyzed with multivariate logistic regression analysis. Hospital variation was assessed before and after case-mix adjustment. A survey was performed among gastroenterological surgeons on the importance of factors for the decision to construct a defunctioning stoma.In total 4368 patients were analyzed and 103 (34%) surgeons participated. Male gender, higher body mass index, lower tumors, preoperative radiotherapy, and treatment in a teaching/university hospital increased the odds for a defunctioning stoma. Unadjusted hospital variation ranged from 0% to 98%. Variation remained after case-mix adjustment (0-100%). There was large variation in factors considered important for the decision; almost all factors were ranked as 'most important' at least once.There is large variation in the use of defunctioning stomas for patients with rectal cancer, and a lack in uniformity of the selection criteria. These results underline the need to improve current decision making and identification of high-risk patients.

Background Adaptive conjoint analysis (ACA) is an individually tailored preferences elicitation technique that mimics actual decision-making processes by asking participants to make trade-offs between the various dimensions that underlie decision problems. ACA is increasingly applied in patient preferences assessments but formal evaluation of its validity and reliability is lacking. Objective To investigate ACA’s validity and reliability in elicitation of treatment outcome preferences. Methods Sixty-eight disease-free rectal cancer patients, treated with surgery with or without preoperative radiotherapy were asked to complete exercises to assess their preferences for radiotherapy [using the treatment trade-off method (TTM)] and for key outcomes associated with radiotherapy (using ACA). We assessed (i) rank ordering of ACA-derived outcome-probability utilities, (ii) compensatory decision making, (iii) ACA test–retest reliability, and (iv) concordance of ACA- and TTM-based preferences. Results All participants completed the TTM and 66 completed the ACA questionnaire, in 15 min on average. Outcome utilities were rank ordered in agreement with probabilities from best to worst in most participants, except for sexual dysfunction. Most participants were willing to trade survival and their most important outcome. Mean importance ratings were similar at retest. ACA- and TTM-based preferences differed. TTM-based preferences were related to past treatment, ACA-based preferences were not. Conclusions ACA assesses group-level preferences reliably over time and captures individual preferences independently from treatment experience in treated cancer patients. ACA seems a valid treatment outcome preference elicitation method in a context in which trade-offs between cure and quality of life need to be considered.

Patient participation in treatment decision-making is being increasingly advocated, although cancer treatments are often guideline-driven. Trade-offs between benefits and side effects underlying guidelines are made by clinicians. Evidence suggests that clinicians are inaccurate at predicting patient values. The aim was to assess what role oncologists and cancer patients prefer in deciding about treatment, and how they view patient participation in treatment decision-making. Seventy disease-free cancer patients and 60 oncologists (surgical, radiation, and medical) were interviewed about their role preferences using the Control Preferences Scale (CPS) and about their views on patient participation using closed- and open-ended questions. Almost all participants preferred treatment decisions to be the outcome of a shared process. Clinicians viewed participation more often as reaching an agreement, whereas 23% of patients defined participation exclusively as being informed. Of the participants,or = 81% thought not all patients are able to participate andor = 74% thought clinicians are not always able to weigh the pros and cons of treatment for patients, especially not quality as compared with length of life. Clinicians seemed reluctant to share probability information on the likely impact of adjuvant treatment. Clinicians should acknowledge the legitimacy of patients' values in treatment decisions. Guidelines should recommend elicitation of patient values at specific decision points.

This chapter first aims to clarify the concepts of values, utilities, and preferences, terms that are often used interchangeably but have distinct meaning and that should be used differentially depending on the context. The chapter then describes current methods to assess values, utilities, and preferences as a function of the level of health decision making at hand, i.e., macro-, meso-, or micro-level and the goal of the assessment. It concludes by offering key directions for future research on how to improve current preference elicitation methods.

Background: The shared decision making (SDM) model states that patients' values and preferences should be clarified to choose a strategy that best fits the patient. This study aimed to assess whether values and preferences of rectal cancer patients are voiced and considered in deciding about preoperative radiotherapy (PRT), and whether this makes patients feel more involved in treatment decision making. Methods: Pre-treatment consultations of radiation oncologists and patients eligible for PRT were audio taped (N= 90). Tapes were transcribed and coded to identify patients' values and treatment preferences. Patients filled in a post-consultation questionnaire on their perceived involvement in decision making (N= 60). Results: Patients' values were voiced for 62/611 of benefits harms addressed (10%), in 38/90 consultations (42%; maximum 4 values per consultation), and most often related to major long-term treatment outcomes. Patients' treatment preferences were discussed in 20/90 consultations (22%). In 16/90 consultations (18%), the oncologists explicitly indicated to consider patients' values or preferences. Patients perceived a significantly more active role in decision making if their values or preferences had been voiced or considered. Conclusions: Patients' values and treatment preferences are voiced or considered in a minority of consultations. If they are, this increases patients' perceived involvement in the decision making process. (C) 2015 Elsevier Ireland Ltd. All rights reserved

Objective Shared decision-making (SDM) is advocated as the model for decision-making in preference-sensitive decisions. In this paper we sketch the history of the concept of SDM, evidence on the occurrence of the steps in daily practice, and provide a clinical audience with communication strategies to support the steps involved. Finally, we discuss ways to improve the implementation of SDM. Results The plea for SDM originated almost simultaneously in medical ethics and health services research. Four steps can be distinguished: (1) the professional informs the patient that a decision is to be made and that the patient's opinion is important; (2) the professional explains the options and their pros and cons; (3) the professional and the patient discuss the patient's preferences and the professional supports the patient in deliberation; (4) the professional and patient discuss the patient's wish to make the decision, they make or defer the decision, and discuss follow-up. In practice these steps are seen to occur to a limited extent. Discussion Knowledge and awareness among both professionals and patients as well as tools and skills training are needed for SDM to become widely implemented. Practice Implications Professionals may use the steps and accompanying communication strategies to implement SDM.

Contains fulltext : 152143.PDF (Publisher’s version ) (Open Access) PURPOSE: The SDM-Q-9 and SDM-Q-Doc measure patient and physician perception of the extent of shared decision making (SDM) during a physician-patient consultation. So far, no self-report instrument for SDM was available in Dutch, and validation of the scales in other languages has been limited. The aim of this study was to translate both scales into Dutch and assess their psychometric characteristics. METHODS: Participants were patients and their treating physicians (general practitioners and medical specialists). Patients (N = 182) rated their consultation using the SDM-Q-9, 43 physicians rated their consultations using the SDM-Q-Doc (N = 201). Acceptability, reliability (internal consistency), and the factorial structure of the instruments were determined. For convergent validity the CPSpost was used. RESULTS: Reliabilities of both scales were high (alpha SDM-Q-9 0.88; SDM-Q-Doc 0.87). The SDM-Q-9 and SDM-Q-Doc total scores correlated as expected with the CPSpost (SDM-Q-9: r = 0.29; SDM-Q-Doc: r = 0.48) and were significantly different between the CPSpost categories, with lowest mean scores when the physician made the decision alone. Principal Component Analyses showed a two-component model for each scale. A confirmatory factor analysis yielded a mediocre, but acceptable, one-factor model, if Item 1 was excluded; for both scales the best indices of fit were obtained for a one-factor solution, if both Items 1 and 9 were excluded. CONCLUSION: The Dutch SDM-Q-9 and SDM-Q-Doc demonstrate good acceptance and reliability; they correlated as expected with the CPSpost and are suitable for use in Dutch primary and specialised care. Although the best model fit was found when excluding Items 1 and 9, we believe these items address important aspects of SDM. Therefore, also based on the coherence with theory and comparability with other studies, we suggest keeping all nine items of the scale. Further research on the SDM-concept in patients and physicians, in different clinical settings and different countries, is necessary to gain a better understanding of the SDM-construct and its measurement.

Background and purposeWe previously found considerable variation in information provision on preoperative radiotherapy (PRT) in rectal cancer. Our aims were to reach consensus among patients and oncologists on which benefits/harms of PRT should be addressed during the consultation, and to assess congruence with daily clinical practice.Materials and methodsA four-round Delphi-study was conducted with two expert panels: (1) 31 treated rectal cancer patients and (2) 35 radiation oncologists. Thirty-seven possible benefits/harms were shown. Participants indicated whether addressing the benefit/harm was (1) essential, (2) desired, (3) not necessary, or (4) to be avoided. Consensus was assumed when ⩾80% of the panel agreed. Results were compared to 81 audio-taped consultations.ResultsThe panels reached consensus that six topics should be addressed in all patients (local control, survival, long term altered defecation pattern and faecal incontinence, perineal wound healing problems, advice to avoid pregnancy), three in male patients (erectile dysfunction, ejaculation disorder, infertility), and four in female patients (vaginal dryness, pain during intercourse, menopause, infertility). On average, less than half of these topics were addressed in daily clinical practice.ConclusionsThis study showed substantial overlap between benefits/harms that patients and oncologists consider important to address during the consultation, and at the same time poor congruence with daily clinical practice.

Objective Probabilities of benefits and harms of treatment may help patients when making a treatment decision. This study aimed to examine (1) whether and how radiation oncologists convey probabilities to rectal cancer patients, and (2) patients' estimates of probabilities of major outcomes of rectal cancer treatment. Methods First consultations of oncologists and patients eligible for preoperative radiotherapy (PRT) ( N =90) were audio taped. Tapes were transcribed verbatim and coded to identify probabilistic information presented. Patients ( N =56) filled in a post-consultation questionnaire on their estimates of probabilities. Results Probabilities were mentioned in 99% (local recurrence), 75% (incontinence), 72% and 40% (sexual dysfunction in males and females, respectively) of cases. Most patients (89%) correctly estimated that PRT decreases the probability of local recurrence, and 10% and 38%/54% that it increases the probability of incontinence and sexual dysfunction in males/females, respectively. Patients tended to underestimate the probabilities of harms of treatment. Conclusion Our results show that oncologists almost always mention probabilities of benefit of PRT. In contrast, probabilities of harms often go unmentioned. The effect of PRT on adverse events is often underestimated. Practice implications Oncologists should stay alert to patients' possible misunderstanding of probabilistic information and should check patients' perceptions of probabilities.

This study sought to describe counsellor–counselee interaction during initial cancer genetic counselling consultations and to examine whether the communication reflects counselees' previsit needs. A total of 130 consecutive counselees, referred mainly for breast or colon cancer, completed a questionnaire before their first appointment at a genetic clinic. Their visit was videotaped. Counselee and counsellor verbal communications were analysed and initiative to discuss 11 genetics-specific conversational topics was assessed. The content of the visit appeared relatively standard. Overall, counselees had a stronger psychosocial focus than counsellors. Counsellors directed the communication more and initiated the discussion of most of the topics assessed. Counselees did not appear to communicate readily in a manner that reflected their previsit needs. Counsellors provided more psychosocial information to counselees in higher need for emotional support, yet did not enquire more about counselees' specific concerns. New counselees may be helped by receiving more information on the counselling procedure prior to their visit, and may be advised to prepare the visit more thoroughly so as to help them verbalise more their queries during the visit.

Background:For shared decision making to be successful, patients should receive sufficient information on possible benefits and harms of treatment options. The aim of this study was to evaluate what information radiation oncologists provide during the decision consultation about preoperative radiotherapy with rectal cancer patients.Methods:Decision consultations of 17 radiation oncologists with 81 consecutive primary rectal cancer patients, eligible for short-course radiotherapy followed by a low-anterior resection, were audio taped. Tapes were transcribed and analysed using the ACEPP (Assessing Communication about Evidence and Patient Preferences) coding scheme.Results:A median of seven benefits/harms were addressed per consultation (range, 2-13). This number ranged within and between oncologists and was not clearly associated with the patient's characteristics. A total of 30 different treatment outcomes were addressed. The effect of radiotherapy on local control was addressed in all consultations, the effect on survival in 16%. The most important adverse effects are bowel and sexual dysfunction. These were addressed in 82% and 85% of consultations, respectively; the latter significantly less often in female than in male patients. Four out of five patients did not initiate discussion on any benefits/harms.Conclusions:Our results showed considerable inconsistency between and within oncologists in information provision, which could not be explained by patient characteristics. This variation indicates a lack of clarity on which benefits/harms of radiotherapy should be discussed with newly-diagnosed patients. This suboptimal patient information hampers the process of shared decision making, in which the decision is based on each individual patients' weighing of benefits and harms.British Journal of Cancer advance online publication, 21 October 2014; doi:10.1038/bjc.2014.546 www.bjcancer.com.

Purpose. Risk prediction models (RPM) in breast cancer quantify survival benefit from adjuvant systemic treatment. These models [e.g. Adjuvant! Online (AO)] are increasingly used during consultations, despite their not being designed for such use. As still little is known about oncologists’ views on and use of RPM to communicate prognosis to patients, we investigated if, why, and how they use RPM.Methods. We disseminated an online questionnaire that was based on the literature and individual and group interviews with oncologists.Results. Fifty-one oncologists (partially) completed the questionnaire. AO is the best known (95%) and most frequently used RPM (96%). It is used to help oncologists decide whether or not to recommend chemotherapy (> 85%), to inform (86%) and help patients decide about treatment (> 80%), or to persuade them to follow the proposed course of treatment (74%). Most oncologists (74%) believe that using AO helps patients understand their prognosis.Conclusion. RPM have found a place in daily practice, especially AO. Oncologists think that using AO helps patients understand their prognosis, yet studies suggest that this is not always the case. Our findings highlight the importance of exploring whether patients understand the information that RPM provide.

Purpose: Treatment decisions in early breast cancer can revolve around type of surgery and whether or not to have adjuvant systemic therapy. This systematic review aims to give an overview of patient selfreported factors affecting preferences for breast conserving surgery (BCS) versus mastectomy (MAST), the minimal benefit patients require from adjuvant chemotherapy (aCT) and/or adjuvant hormonal therapy (aHT) to consider it worthwhile, and factors influencing this minimally-required benefit. Methods: PubMed and EMBASE were searched for relevant articles. Two reviewers independently selected articles and extracted data. Results: We identified 15 studies on surgical and six on adjuvant systemic treatment decision-making. Factors affecting patient preference for BCS most frequently related to body image (44%), while factors influencing preference for MAST most often related to survival/recurrence (46%). To make adjuvant systemic therapy worthwhile, the median required absolute increase in survival rate was 0.1–10% and the median required additional life expectancy was 1 day to 5 years. The range of individual preferences was wide within studies. Participants in the aHT studies required larger median benefits than those in the aCT studies. Factors associated with judging smaller benefits sufficient most often (44%) related to quality of life (e.g., less treatment toxicity). Conclusion: Decisive factors in patients’ preferences for surgery type commonly relate to body image and survival/recurrence. Most participants judged small to moderate benefits sufficient to consider adjuvant systemic therapy worthwhile, but individual preferences varied widely. Clinicians should therefore consider the patient’s preferences to tailor their treatment recommendations accordingly.

Background: Vaginal brachytherapy (VBT) in high–intermediate-risk endometrial cancer (EC) provides a significant reduction in the risk of local cancer recurrence, but without survival benefit and with increased mucosal atrophy. Five-year local control is estimated to be similar for VBT and a watchful waiting policy (WWP), in which patients receive VBT combined with external radiation in case of a recurrence. Our aim was to assess treatment preferences of EC patients and clinicians regarding VBT and WWP, and to evaluate their preferred and perceived involvement in treatment decision making. Methods: Interviews were held with 95 treated EC patients. The treatment trade-off method was used to assess the minimally desired benefit from VBT in local control. Patients' preferred and perceived involvement in decision making were assessed using a questionnaire. Seventy-seven clinicians completed a questionnaire assessing their minimally desired benefit and preferred involvement in decision making. Results: Minimally desired benefit of VBT was significantly lower for patients than for clinicians (median=0 vs 8%, P

Background It is a challenge for oncologists to distinguish patients with breast cancer who can forego adjuvant systemic treatment without negatively affecting survival from those who cannot. Risk prediction models (RPMs) have been developed for this purpose. Oncologists seem to have embraced RPMs (particularly Adjuvant!) in clinical practice and often use them to communicate prognosis to patients. We performed a systematic review of published RPMs and provide an overview of the prognosticators incorporated and reported clinical validity. Subsequently, we selected the RPMs that are currently used in the clinic for a more in-depth assessment of clinical validity. Finally, we assessed lay comprehensibility of the reports generated by RPMs. Methods Pubmed, EMBASE, and Web of Science were searched. Two reviewers independently selected relevant articles and extracted data. Agreement on article selection and data extraction was achieved in consensus meetings. Results We identified RPMs based on clinical prognosticators (N = 6) and biomolecular features (N = 14). Generally predictions from RPMs seem to be accurate, except for patients ≤ 50 years or ≥ 75 years at diagnosis, in addition to Asian populations. RPM reports contain much medical jargon or technical details, which are seldom explained in lay terms. Conclusion The accuracy of RPMs' prognostic estimates is suboptimal in some patient subgroups. This urgently needs to be addressed. In their current format, RPM reports are not conducive to patient comprehension. Communicating survival probabilities using RPM might seem straightforward, but it is fraught with difficulties. If not done properly, it can backfire and confuse patients. Evidence to guide best communication practice is needed.