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... Show moreIntroduction: 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. Show less
Keij, S.M.; Duijn-Bakker, N. van; Stiggelbout, A.M.; Pieterse, A.H. 2021
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... Show moreObjectives: 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. Show less
Uncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending... Show moreUncertainty 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. Show less
ObjectivesThe 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... Show moreObjectivesThe 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.MethodsSample 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.ResultsCronbach'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.DiscussionThese 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. Show less
Neve, O.M.; Soulier, G.; Hendriksma, M.; Mey, A.G.L. van der; Linge, A. van; Benthem, P.P.G. van; ... ; Stiggelbout, A.M. 2020
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... Show morePurpose 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. Show less
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... Show moreIntroduction: 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. Show less
Objective:To develop and validate an outcome scale for the cervical radicular syndrome and to build a mapping, predicting EQ-5D utility from the new scale. Study design and setting:An item pool was... Show moreObjective:To develop and validate an outcome scale for the cervical radicular syndrome and to build a mapping, predicting EQ-5D utility from the new scale. Study design and setting:An item pool was developed based on literature and patient and clinician interviews. Item selection was based on symptomatology, factor analysis, and internal consistency. We assessed: (a) test-retest reliability by standard error of measurement and intraclass correlation coefficients; (b) construct validity by testing 22 hypotheses on relationships with existing measures and known-group differences. For the mapping, performance was assessed by mean absolute error and root mean squared error. Results:A total of 254 patients with cervical radicular syndrome completed the first questionnaire, 61 stable patients a retest. Item selection led to a 21-item questionnaire consisting of three subscales: Symptoms, Energy and postures, and Actions and activities. Standard error of measurement values ranged from 6.7 to 11.2 on a 0 to 100 scale. All subscales showed good reliability (intraclass correlation coefficients: 0.84, 0.87, and 0.94). All hypotheses for construct validity were confirmed. A linear utility mapping was preferred, with reasonable statistical performance. Conclusion:We developed a reliable and valid cervical radicular syndrome specific outcome scale, called the Cervical Radiculopathy Impact Scale (CRIS). This new questionnaire may facilitate (cost-)effectiveness studies in this field. Show less
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... Show moreObjective 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 < .05) but there was no ongoing decline. After 6 months, 17% of participants with no cancer experienced high level of cancer worry (CWS >= 10). Yet, only 5% reported high level of regret about screening participation (DRS > 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. Show less
Bomhof-Roordink, H.; Gartner, F.R.; Duijn-Bakker, N. van; Weijden, T. van der; Stiggelbout, A.M.; Pieterse, A.H. 2020
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... Show moreBackground 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. Show less
Kunneman, M.; Stiggelbout, A.M.; Pieterse, A.H. 2020
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... Show moreObjective: 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. Show less
Engels, N.; Graav, G. de; Nat, P. van der; Dorpel, M. van den; Bos, W.J.; Stiggelbout, A.M. 2020
Introduction Patients with advanced kidney disease (AKD) have to make difficult treatment modality decisions as their disease progresses towards end-stage kidney disease. International guidelines... Show moreIntroduction Patients with advanced kidney disease (AKD) have to make difficult treatment modality decisions as their disease progresses towards end-stage kidney disease. International guidelines in nephrology suggest shared decision-making (SDM) to help patients make timely treatment modality decisions that align with their values and preferences. However, systematic reviews or scoping reviews on these SDM interventions and on their reported use or outcomes are lacking. This limits the adoption of SDM in clinical practice and hampers further research and development on the subject. Our aim is to provide a comprehensive and up-to-date overview of these SDM interventions by means of a scoping review of the literature. Scoping reviews can provide a broad overview of a topic, identify gaps in the research knowledge base and report on the types of evidence that address and inform practices. This paper presents our study protocol.Methods and analysis The proposed scoping review will be performed in accordance with the Joanna Briggs Institute's (JBI) methodology for scoping reviews. It will cover both qualitative and quantitative scientific literature, as well as the grey literature on SDM interventions for treatment modality decisions in AKD. Only literature written in English will be considered for inclusion. Two independent reviewers will participate in an iterative process of screening the literature, paper selection and data extraction. Disagreements between the reviewers will be resolved by discussion until consensus is reached or after consultation with the research team when needed. Results will be reported with descriptive statistics and diagrammatic or tabular displayed information, accompanied by narrative summaries as explained in the JBI guidelines.Ethics and dissemination Ethical approval for the conduct of this study is not required. We will analyse previously collected data for the proposed scoping review. Our results will be published in a peer-reviewed journal and disseminated through conferences and/or seminars. Show less
Heuvel, L. van den; Dorsey, R.R.; Prainsack, B.; Post, B.; Stiggelbout, A.M.; Meinders, M.J.; Bloem, B.R. 2020
Clinical decision making for Parkinson's disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the... Show moreClinical decision making for Parkinson's disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected study populations, making it difficult to translate the outcome to the care for individual patients in everyday clinical practice. Big data, including data from real-life unselected Parkinson populations, can help to bridge this information gap. Fine-grained patient profiles created from big data have the potential to aid in identifying therapeutic approaches that will be most effective given each patient's individual characteristics, which is particularly important for a disorder characterized by such tremendous interindividual variability as Parkinson's disease. In this viewpoint, we argue that big data approaches should be acknowledged and harnessed, not to replace existing information resources, but rather as a fourth and complimentary source of information in clinical decision making, helping to represent the full complexity of individual patients. We introduce the `quadruple decision making' model and illustrate its mode of action by showing how this can be used to pursue precision medicine for persons living with Parkinson's disease. Show less
Objective: To investigate physicians' preferred and usual roles in decision making in medical consultations, and their perception of shared decision making (SDM).Methods: A cross-sectional survey... Show moreObjective: To investigate physicians' preferred and usual roles in decision making in medical consultations, and their perception of shared decision making (SDM).Methods: A cross-sectional survey of 785 physicians in a large Dutch general teaching hospital was undertaken in June 2018, assessing their preferred and usual decision making roles (Control Preference Scale), and their view on SDM key components (SDMQ9 questionnaire).Results: Most physicians (n = 232, 58%) preferred SDM, but more often performed paternalistic decision making (n = 121, 31%) in daily practice than they preferred (n = 80, 20%, p < 0.0001), most commonly because they judged the patient to be incapable of participating in decision making. Most physicians preferring SDM presented different options for treatment (n = 213, 92%) with their advantages and disadvantages (n = 209, 90%) but fewer made clear that a decision had to be made (n = 104, 45%) or explored the patient's wish how to be involved in decision making (n = 80, 34%).Conclusion: Although most physicians prefer SDM, they often revert to a paternalistic approach and tend to limit SDM to discussing treatment options.Practice implication: Teaching physicians in SDM should include raising awareness about discussing the decision process itself and help physicians to counter their tendency to revert to paternalistic decision making in daily practice. (c) 2019 Elsevier B.V. All rights reserved. Show less
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... Show morePre-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 < 0.02), and clinical geneticists scored lower on SDM compared with other types of counselors (p < 0.03). Our findings that counselors mainly communicate scientific uncertainties and use space-reducing responses imply that the way counselors address counselees' personal uncertainties and concerns during initial cancer genetic counseling is suboptimal. Show less
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... Show moreBackground. 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 (beta = 4.5, P = 0.03) and the use of a risk prediction model during the consultation (beta = 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. Show less
Objectives To (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... Show moreObjectives To (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.Design Systematic review.Eligibility criteria Peer-reviewed articles in English presenting a new or adapted model of SDM.Information sources Academic Search Premier, Cochrane, Embase, Emcare, PsycINFO, PubMed, and Web of Science were systematically searched for articles published up to and including September 2, 2019.Results Forty 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.Conclusions This 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. Show less
Objective Many 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... Show moreObjective Many 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.Design We performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.Setting Dutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.Participants 14 CPG panel members.Main outcomes For 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.Results We 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.Conclusions The motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making. Show less
