Objectives To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised... Show moreObjectives To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised information on their content, use and reported results. To provide an overview of interventions currently under development or investigation. Design The JBI methodology for scoping reviews was followed. This review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist. Data sources MEDLINE, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO, PROSPERO and Academic Search Premier for peer-reviewed literature. Other online databases (eg, clinicaltrials.gov, OpenGrey) for grey literature. Eligibility for inclusion Records in English with a study population of patients >18 years of age with an estimated glomerular filtration rate <30 mL/min/1.73 m(2). Records had to be on the subject of SDM, or explicitly mention that the intervention reported on could be used to support SDM for treatment modality decisions in AKD. Data extraction and synthesis Two reviewers independently screened and selected records for data extraction. Interventions were categorised as prognostic tools (PTs), educational programmes (EPs), patient decision aids (PtDAs) or multicomponent initiatives (MIs). Interventions were subsequently categorised based on the decisions they were developed to support. Results One hundred forty-five interventions were identified in a total of 158 included records: 52 PTs, 51 EPs, 29 PtDAs and 13 MIs. Sixteen (n=16, 11%) were novel interventions currently under investigation. Forty-six (n=46, 35.7%) were reported to have been implemented in clinical practice. Sixty-seven (n=67, 51.9%) were evaluated for their effects on outcomes in the intended users. Conclusion There is no conclusive evidence on which intervention is the most efficacious in supporting SDM for treatment modality decisions in AKD. There is a lot of variation in selected outcomes, and the body of evidence is largely based on observational research. In addition, the effects of these interventions on SDM are under-reported. Show less
Objectives: The integration of shared decision making (SDM) and patient-centered communication (PCC) is needed to actively involve patients in decision making. This study examined the relationship... Show moreObjectives: The integration of shared decision making (SDM) and patient-centered communication (PCC) is needed to actively involve patients in decision making. This study examined the relationship between shared decision making and patient-centered communication. Methods: In 82 videotaped hospital outpatient consultations by 41 medical specialists from 18 disciplines, we assessed the extent of shared decision making by the OPTION5 score and patient-centered communication by the Four Habits Coding Scheme (4HCS), and analyzed the occurrence of a high versus low degree (above or below median) of SDM and/or PCC, and its relation to patient satisfaction scores. Results: In comparison to earlier studies, we observed comparable 4HCS scores and relatively low OPTION5 scores. The correlation between the two was weak (r = 0.29, p = 0.009). In 38% of consultations, we observed a combination of high SDM and low PCC scores or vice versa. The combination of a high SDM and high PCC, which was observed in 23% of consultations, was associated with significantly higher patient satisfaction scores. Conclusion: Shared decision making and patient-centered communication are not synonymous and do not always co-exist. Practice implications: The value of integrated training of shared decision making and patient-centered communication should be further explored. Show less
Objectives To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment. Design Scoping review.... Show moreObjectives To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment. Design Scoping review. Eligibility criteria Peer-reviewed articles in English or Dutch reporting on associations between patient-related characteristics and the occurrence of SDM for actual treatment decisions. Information sources COCHRANE Library, Embase, MEDLINE, PsycInfo, PubMed and Web of Science were systematically searched for articles published until 25 March 2019. Results The search yielded 5289 hits of which 53 were retained. Multiple categories of patient characteristics were identified: (1) sociodemographic characteristics (eg, gender), (2) general health and clinical characteristics (eg, symptom severity), (3) psychological characteristics and coping with illness (eg, self-efficacy) and (4) SDM style or preference. Many characteristics showed no association or unclear relationships with SDM occurrence. For example, for female gender positive, negative and, most frequently, non-significant associations were seen. Conclusions A large variety of patient-related characteristics have been studied, but for many the association with SDM occurrence remains unclear. The results will caution often-made assumptions about associations and provide an important step to target effective interventions to foster SDM with all patients. Show less
Background Although shared decision making is championed as the preferred model for patient care by patient organizations, researchers and medical professionals, its application in daily practice... Show moreBackground Although shared decision making is championed as the preferred model for patient care by patient organizations, researchers and medical professionals, its application in daily practice remains limited. We previously showed that residents more often prefer paternalistic decision making than their supervisors. Because both the views of residents on the decision-making process in medical consultations and the reasons for their 'paternalism preference' are unknown, this study explored residents' views on the decision-making process in medical encounters and the factors affecting it. Methods We interviewed 12 residents from various specialties at a large Dutch teaching hospital in 2019-2020, exploring how they involved patients in decisions. All participating residents provided written informed consent. Data analysis occurred concurrently with data collection in an iterative process informing adaptations to the interview topic guide when deemed necessary. Constant comparative analysis was used to develop themes. We ceased data collection when information sufficiency was achieved. Results Participants described how active engagement of patients in discussing options and decision making was influenced by contextual factors (patient characteristics, logistical factors such as available time, and supervisors' recommendations) and by limitations in their medical and shared decision-making knowledge. The residents' decision-making behavior appeared strongly affected by their conviction that they are responsible for arriving at the correct diagnosis and providing the best evidence-based treatment. They described shared decision making as the process of patients consenting with physician-recommended treatment or patients choosing their preferred option when no best evidence-based option was available. Conclusions Residents' decision making appears to be affected by contextual factors, their medical knowledge, their knowledge about SDM, and by their beliefs and convictions about their professional responsibilities as a doctor, ensuring that patients receive the best possible evidence-based treatment. They confuse SDM with acquiring informed consent with the physician's treatment recommendations and with letting patients decide which treatment they prefer in case no evidence based guideline recommendation is available. Teaching SDM to residents should not only include skills training, but also target residents' perceptions and convictions regarding their role in the decision-making process in consultations. Show less
Staalduinen, D.J. van; Bekerom, P. van den; Groeneveld, S.; Kidanemariam, M.; Stiggelbout, A.M.; Akker-van Marle, M.E. van den 2022
Background: The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was... Show moreBackground: The aim of this study was to identify and summarize how value-based healthcare (VBHC) is conceptualized in the literature and implemented in hospitals. Furthermore, an overview was created of the effects of both the implementation of VBHC and the implementation strategies used.Methods: A scoping review was conducted by searching online databases for articles published between January 2006 and February 2021. Empirical as well as non-empirical articles were included.Results: 1729 publications were screened and 62 were used for data extraction. The majority of the articles did not specify a conceptualization of VBHC, but only conceptualized the goals of VBHC or the concept of value. Most hospitals implemented only one or two components of VBHC, mainly the measurement of outcomes and costs or Integrated Practice Units (IPUs). Few studies examined effects. Implementation strategies were described rarely, and were evaluated even less.Conclusions: VBHC has a high level of interpretative variability and a common conceptualization of VBHC is therefore urgently needed. VBHC was proposed as a shift in healthcare management entailing six reinforcing steps, but hospitals have not implemented VBHC as an integrative strategy. VBHC implementation and effectiveness could benefit from the interdisciplinary collaboration between healthcare and management science. Show less
Background Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its... Show moreBackground Shared decision-making (SDM) is often considered the ideal for decision-making in oncology. Views of specific groups such as ethnic minorities have seldom been considered in its development. Aim In this study we seek to assess in oncology if there is a need for adaptation of the current SDM model to ethnic minorities and to formulate possible adjustments. Design This study is embedded in empirical bioethics, an interdisciplinary approach integrating empirical data with ethical reasoning to formulate normative conclusions regarding a practice. For the empirical social scientific part, a cross-sectional qualitative study will be conducted; for the ethical reflection the Reflective Equilibrium will be used to develop a coherent view on the application of SDM among ethnic minorities in oncology. Method Semi-structured interviews combined with visual methods (timelines and relational maps) will be held with healthcare professionals (HCPs), ethnic minority patients, and their relatives to identify values steering the behavior of these actors in SDM. In addition, focus groups (FGs) will be held with ethnic minority community members to identify value structures at the group level. Respondents will be recruited through organizations with access to ethnic minorities and collaborating hospitals. Data will be analyzed using a reflexive thematic analysis through the lens of Schwartz's value theory. The results of the empirical phase will be included in the RE to formulate possible adjustments of the SDM model, if needed. Discussion The integration of empirical data with ethical reflection is an innovative method in decision-making. This method enables a systematic and profound assessment of the need for adaptation of SDM and the formulation of theoretically and empirically based suggestions for adaptations of the model. Findings of this study may enrich the SDM model. Show less
Backgrounds Research on shared decision-making (SDM) has mainly focused on decisions about treatment (e.g., medication or surgical procedures). Little is known about the decision-making process for... Show moreBackgrounds Research on shared decision-making (SDM) has mainly focused on decisions about treatment (e.g., medication or surgical procedures). Little is known about the decision-making process for the numerous other decisions in consultations. Objectives We assessed to what extent patients are actively involved in different decision types in medical specialist consultations and to what extent this was affected by medical specialist, patient, and consultation characteristics. Design Analysis of video-recorded encounters between medical specialists and patients at a large teaching hospital in the Netherlands. Participants Forty-one medical specialists (28 male) from 18 specialties, and 781 patients. Main Measure Two independent raters classified decisions in the consultations in decision type (main or other) and decision category (diagnostic tests, treatment, follow-up, or other advice) and assessed the decision-making behavior for each decision using the Observing Patient Involvement (OPTION)(5) instrument, ranging from 0 (no SDM) to 100 (optimal SDM). Scheduled and realized consultation duration were recorded. Key Result In the 727 consultations, the mean (SD) OPTION5 score for the main decision was higher (16.8 (17.1)) than that for the other decisions (5.4 (9.0), p < 0.001). The main decision OPTION5 scores for treatment decisions (n = 535, 19.2 (17.3)) were higher than those for decisions about diagnostic tests (n = 108, 14.6 (16.8)) or follow-up (n = 84, 3.8 (8.1), p < 0.001). This difference remained significant in multilevel analyses. Longer consultation duration was the only other factor significantly associated with higher OPTION5 scores (p < 0.001). Conclusion Most of the limited patient involvement was observed in main decisions (versus others) and in treatment decisions (versus diagnostic, follow-up, and advice). SDM was associated with longer consultations. Physicians' SDM training should help clinicians to tailor promotion of patient involvement in different types of decisions. Physicians and policy makers should allow sufficient consultation time to support the application of SDM in clinical practice. Show less
Plas-Krijgsman, W.G. van der; Giardiello, D.; Putter, H.; Steyerberg, E.W.; Bastiaannet, E.; Stiggelbout, A.M.; ... ; Glas, N.A. de 2021
Background Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate... Show moreBackground Current prediction tools for breast cancer outcomes are not tailored to the older patient, in whom competing risk strongly influences treatment effects. We aimed to develop and validate a prediction tool for 5-year recurrence, overall mortality, and other-cause mortality for older patients (aged >= 65 years) with early invasive breast cancer and to estimate individualised expected benefits of adjuvant systemic treatment.Methods We selected surgically treated patients with early invasive breast cancer (stage I-III) aged 65 years or older from the population-based FOCUS cohort in the Netherlands. We developed prediction models for 5-year recurrence, overall mortality, and other-cause mortality using cause-specific Cox proportional hazard models. External validation was performed in a Dutch Cancer registry cohort. Performance was evaluated with discrimination accuracy and calibration plots.Findings We included 2744 female patients in the development cohort and 13631 female patients in the validation cohort. Median age was 74.8 years (range 65-98) in the development cohort and 76.0 years (70-101) in the validation cohort. 5-year follow-up was complete for more than 99% of all patients. We observed 343 and 1462 recurrences, and 831 and 3594 deaths, of which 586 and 2565 were without recurrence, in the development and validation cohort, respectively. The area under the receiver-operating-characteristic curve at 5 years in the external dataset was 0.76 (95% CI 0.75-0.76) for overall mortality, 0.76 (0.76-0.77) for recurrence, and 0.75 (0.74-0.75) for other-cause mortality.Interpretation The PORTRET tool can accurately predict 5-year recurrence, overall mortality, and other-cause mortality in older patients with breast cancer. The tool can support shared decision making, especially since it provides individualised estimated benefits of adjuvant treatment. Copyright (C) 2021 The Author(s). Published by Elsevier Ltd. 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
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
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
Multigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty,... Show moreMultigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty, for example when variants of unknown significance are identified. This study explores counsellors' and counselees' experiences with uncertainty, and how they discuss uncertainties and decide about multigene panel testing. Six focus groups were conducted including 38 counsellors. Twelve counselees who had received genetic counselling about a multigene panel test were interviewed. The focus group sessions and interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively by two independent coders and data were examined to obtain a comprehensive list of themes. Counsellors identified several uncertainties, e.g. finding a variant of unknown significance, or detecting an unsolicited finding. Most difficulty was experienced in deciding what uncertain information to communicate to counselees and how to do so. The extent and manner of providing uncertain information differed between centres and between counsellors. Counsellors attached more value to counselees' preferences in decision making compared to less extended tests. Counselees experienced difficulty in recalling which uncertainties had been discussed during genetic counselling. They primarily reported to have experienced uncertainty about their own and their relatives' risk of developing cancer. Counselees felt they had had a say in the decision. This study showed that counsellors need more guidance on whether and how to convey uncertainty. Undesirable practice variation in the communication of uncertainty may be prevented by determining what information should minimally be discussed to enable informed decision making. Show less
Bomhof-Roordink, H.; Fischer, M.J.; Duijn-Bakker, N. van; Baas-Thijssen, M.C.; Weijden, T. van der; Stiggelbout, A.M.; Pieterse, A.H. 2019
![Patient role in SDM models: Re: Berger Z, Galasinski D, Scalia P, Dong K, Blunt HB, Elwyn G, "The Submissive Silence of Others: Examining Definitions of Shared Decision Making" [Patient Educ Couns (2021) doi: https://doi.org/10.1016/j.pec.2021.10.026]](/sites/all/modules/custom/islandora_solr_search/images/defaultimg.png?solr_nav%5Bid%5D=9c21ed8b34b075ce7474&solr_nav%5Bpage%5D=0&solr_nav%5Boffset%5D=2)
