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(1) Background: Fact boxes present the benefits and harms of medical interventions in the form of tables. Some studies suggest that people with a lower level of education could profit more from graphic presentations. The objective of the study was to compare three different formats in fact boxes with regard to verbatim and gist knowledge in general and according to the educational background. (2) Methods: In May 2020, recruitment started for this randomized controlled trial. Participants were given one out of three presentation formats: natural frequencies, percentages, and graphic. We used Limesurvey® to assess comprehension/risk perception as the primary outcome. The Kruskal–Wallis test and the Mann–Whitney U test were used in addition to descriptive analyses. (3) Results: A total of 227 people took part in the study. Results of the groups were nearly identical in relation to the primary outcome verbatim knowledge, likewise in gist knowledge. However, participants with lower educational qualifications differed from participants with higher educational qualifications in terms of verbatim knowledge in the group percentages. (4) Conclusions: The results indicate that all three forms of presentation are suitable for conveying the content. Further research should take the individual preferences regarding the format into account.

In Norway, shared decision-making (SDM) is on the top of the priorities announced by the health authorities. Accountability for implementing this priority has been delegated to the four health regions, and from there into particular departments, hospital trusts, working groups or SDM coordinators. Using abundant public funding, different approaches to producing and implementing patient decision aids have been developed. However, none of these is implemented by any Norwegian services on a regular basis, while the accessible decision aids on the national health platform are not quality approved and in very little use. An ongoing new project is aimed to resolve this dilemma. Health professional training has been developed as a meta-curriculum with multiple modules, adaptive to setting and user group, and designed as an open-source learning platform, based upon the experience of "SDM Ambassadors" delivering the training. Most of the modules are already implemented on a regular basis in the South-Eastern Health Region, and 5000 health care professionals have already graduated from the training modules. However, in the standard patient pathways, and in most of the national medical guidelines, the patient is still considered to be a passive receiver of directives or recommendations, rather than an active participant in their own health decisions. Considerable structural implementation has been done in the education guidelines of all health professions on all levels to embed SDM principles. Teaching in SDM skills, quality of information and evidence-based nursing has become standard in most of the programs at Norwegian universities. Nevertheless, we currently still have no reliable estimate on the degree to which patients are actually involved in their own health decision-making. Further efforts in the process of implementing the patient's choice in the health system should involve the municipal services, follow a research-based strategy, include monitoring and consider the quality level of the informational environment of health-related decisions.

Background: Decision coaching is non-directive support delivered by a healthcare provider to help patients prepare to actively participate in making a health decision. ‘Healthcare providers’ are considered to be all people who are engaged in actions whose primary intent is to protect and improve health (e.g. nurses, doctors, pharmacists, social workers, health support workers such as peer health workers). Little is known about the effectiveness of decision coaching. Objectives: To determine the effects of decision coaching (I) for people facing healthcare decisions for themselves or a family member (P) compared to (C) usual care or evidence-based intervention only, on outcomes (O) related to preparation for decision making, decisional needs and potential adverse effects. Search methods: We searched the Cochrane Library (Wiley), Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), CINAHL (Ebsco), Nursing and Allied Health Source (ProQuest), and Web of Science from database inception to June 2021. Selection criteria: We included randomised controlled trials (RCTs) where the intervention was provided to adults or children preparing to make a treatment or screening healthcare decision for themselves or a family member. Decision coaching was defined as: a) delivered individually by a healthcare provider who is trained or using a protocol; and b) providing non-directive support and preparing an adult or child to participate in a healthcare decision. Comparisons included usual care or an alternate intervention. There were no language restrictions. Data collection and analysis: Two authors independently screened citations, assessed risk of bias, and extracted data on characteristics of the intervention(s) and outcomes. Any disagreements were resolved by discussion to reach consensus. We used the standardised mean difference (SMD) with 95% confidence intervals (CI) as the measures of treatment effect and, where possible, synthesised results using a random-effects model. If more than one study measured the same outcome using different tools, we used a random-effects model to calculate the standardised mean difference (SMD) and 95% CI. We presented outcomes in summary of findings tables and applied GRADE methods to rate the certainty of the evidence. Main results: Out of 12,984 citations screened, we included 28 studies of decision coaching interventions alone or in combination with evidence-based information, involving 5509 adult participants (aged 18 to 85 years; 64% female, 52% white, 33% African-American/Black; 68% post-secondary education). The studies evaluated decision coaching used for a range of healthcare decisions (e.g. treatment decisions for cancer, menopause, mental illness, advancing kidney disease; screening decisions for cancer, genetic testing). Four of the 28 studies included three comparator arms. For decision coaching compared with usual care (n = 4 studies), we are uncertain if decision coaching compared with usual care improves any outcomes (i.e. preparation for decision making, decision self-confidence, knowledge, decision regret, anxiety) as the certainty of the evidence was very low. For decision coaching compared with evidence-based information only (n = 4 studies), there is low certainty-evidence that participants exposed to decision coaching may have little or no change in knowledge (SMD -0.23, 95% CI: -0.50 to 0.04; 3 studies, 406 participants). There is low certainty-evidence that participants exposed to decision coaching may have little or no change in anxiety, compared with evidence-based information. We are uncertain if decision coaching compared with evidence-based information improves other outcomes (i.e. decision self-confidence, feeling uninformed) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with usual care (n = 17 studies), there is low certainty-evidence that participants may have improved knowledge (SMD 9.3, 95% CI: 6.6 to 12.1; 5 studies, 1073 participants). We are uncertain if decision coaching plus evidence-based information compared with usual care improves other outcomes (i.e. preparation for decision making, decision self-confidence, feeling uninformed, unclear values, feeling unsupported, decision regret, anxiety) as the certainty of the evidence was very low. For decision coaching plus evidence-based information compared with evidence-based information only (n = 7 studies), we are uncertain if decision coaching plus evidence-based information compared with evidence-based information only improves any outcomes (i.e. feeling uninformed, unclear values, feeling unsupported, knowledge, anxiety) as the certainty of the evidence was very low. Authors' conclusions: Decision coaching may improve participants’ knowledge when used with evidence-based information. Our findings do not indicate any significant adverse effects (e.g. decision regret, anxiety) with the use of decision coaching. It is not possible to establish strong conclusions for other outcomes. It is unclear if decision coaching always needs to be paired with evidence-informed information. Further research is needed to establish the effectiveness of decision coaching for a broader range of outcomes.

Background Relapses of multiple sclerosis are burdensome events and entail potentially lasting loss of function. People with multiple sclerosis have to consider corticosteroids, providing limited benefits and the risk of adverse effects. Objective To develop and validate a questionnaire investigating the internal process of people with multiple sclerosis making decisions about corticosteroids. Methods The questionnaire is structured by three domains, attitude, subjective social norm, and perceived behavioural control, which according to the theory of planned behaviour determine action planning. The development is inspired by a previous questionnaire studying decisions on immunotherapy. The questionnaire was tested in qualitative think-aloud interviews (n=10) for feasibility and comprehensibility and in an online survey (n=203) to assess construct and criterion validity. Results The 18-item questionnaire was considered feasible and comprehensible. It predicted the intention to receive corticosteroids in up to 82.3% of cases. “Subjective social norm” impacted most on intention. The questionnaire also proved sensitive for autonomy preferences of people with multiple sclerosis. Conclusion This study shows that the questionnaire appropriately explains the internal process people with multiple sclerosis run through when considering corticosteroids. It can be used to inform developments of tailored support for people with multiple sclerosis in making informed decisions about relapse management.

BackgroundHealthcare providers need training to implement shared decision making (SDM). In Norway, we developed “Ready for SDM”, a comprehensive SDM curriculum tailored to various healthcare providers, settings, and competence levels, including a course targeting interprofessional healthcare teams. The overall aim was to evaluate a train-the-trainer (TTT) program for healthcare providers wanting to offer this course within their hospital trust.MethodsOur observational descriptive design was informed by Kirkpatrick´s Model of Educational Outcomes. The South-Eastern Regional Health Authority invited healthcare providers from all health trusts in its jurisdiction to attend. The TTT consisted of a one-day basic course with lectures on SDM, exercises and group reflections followed by a two-day advanced course including an SDM observer training. Immediately after each of the two courses, reaction and learning (Kirkpatrick levels 1 and 2) were assessed using a self-administered questionnaire. After the advanced course, observer skills were operationalized as accuracy of the participants’ assessment of a consultation compared to an expert assessment. Within three months post-training, we measured number of trainings conducted and number of healthcare providers trained (Kirkpatrick level 3) using an online survey. Qualitative and quantitative descriptive analysis were performed.ResultsTwenty-one out of 24 (basic) and 19 out of 22 (advanced) healthcare providers in 9 health trusts consented to participate. The basic course was evaluated as highly acceptable, the advanced course as complex and challenging. Participants identified a need for more training in pedagogical skills and support for planning implementation of SDM-training. Participants achieved high knowledge scores and were positive about being an SDM trainer. Observer skills regarding patient involvement in decision-making were excellent (mean of weighted t = .80). After three months, 67% of TTT participants had conducted more than two trainings each and trained a total of 458 healthcare providers.ConclusionFindings suggest that the TTT is a feasible approach for supporting large-scale training in SDM. Our study informed us about how to improve the advanced course. Further research shall investigate the efficacy of the training in the context of a comprehensive multifaceted strategy for implementing SDM in clinical practice.Trial registration: Retrospectively registered at ISRCTN (99432465) March 25, 2020.

Background Evidence-based practice, decision aids, patient preferences and autonomy preferences (AP) play an important role in making decisions with the patient. They are crucial in the process of a shared decision making (SDM) and can be incorporated into quality criteria for patient involvement in health care. However, there are few studies on SDM and AP in the field of dentistry. This study explored patients’ autonomy preferences in dentistry in comparison to other medical domains, comparing them with patient preferences in two other cohorts of patients with different conditions and in different health care settings. Methods A sample of 100 dental patients attending 16 dentists was consecutively recruited in a university-based prosthodontic clinic. Patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions were compared using the Control Preference Scale (CPS). This was followed by cross sectional surveys to study autonomy preferences in three additional cohorts recruited from general practices (n = 100), a multiple sclerosis clinic (n = 109), and a university-based prosthodontic clinic (n = 100). A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in the additional cohorts. Results Dentists were less willing to give patients control than patients were willing to enact autonomy. However, decisions about management of tooth loss were considered relevant for a shared decision making by both parties. When comparing cohorts from different samples, the highest AP was expressed by people with multiple sclerosis and the lowest by patients in dentistry (means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p = .035). There were considerable intra-individual differences in autonomy preferences referring to different decision types (p p Conclusion There is an important role of patient participation in decision making in dentistry. Furthermore, PA should be considered with respect to specific medical decisions instead of assessing autonomy preferences in general implying a need for communication skills training of health care professionals.

Background A variety of management options (e.g. immunotherapies, lifestyle interventions, and rehabilitation) are available for people with relapsing-remitting multiple sclerosis (RRMS). Besides coping with the diagnosis, people with MS (pwMS) have to make complex decisions such as deciding about immunotherapies. In addition to factual information, reports of patient experiences (PEx) may support patients in decision-making. The added value of PEx in decision-making is not clear, and controlled studies are rare. Therefore, systematic methods are necessary to develop and analyse PEx. As there are no evaluated PEx for MS in Germany, we are currently creating a website presenting PEx structured according to topics and illustrated by video, audio, and text files. We aim to determine the feasibility of an intervention using PEx and evaluate whether PEx may help pwMS in their immunotherapy decision-making processes as a supplement to evidence-based information. Methods This project will follow the Medical Research Council framework for development and evaluation of complex interventions. After the development of a website with PEx, a randomised controlled pilot trial (pilot RCT) will be conducted in 2–3 MS centres, clinics, or rehabilitation centres including 55 pwMS and accompanied by a process evaluation. Patients with a RRMS diagnosis considering immunotherapy are eligible. The primary outcome is decision self-efficacy. Secondary outcomes include preparation for decision-making, decisional conflict, risk knowledge, confidence in active participation, affective forecasting, social support, and self-reported impact of eHealth on its users. Participants will be randomly assigned either to (i) an intervention group with 4 weeks access to an evidence-based patient information resource and the PExMS-website as an adjunct or to (ii) the control group with access to evidence-based information alone. A 6-member advisory panel involving representatives of pwMS, researchers, and neurologists, who accompany the whole project, will mentor this pilot RCT. Discussion The intervention was developed with systematic methods, created with active patient involvement and in critical appraisal by an expert advisory panel. The study is innovative as it contributes to the controversial evidence on the use of PEx in the context of evidence-based patient information. Trial registration ClinicalTrials.gov, NCT04236544

Background: Evidence-based Dentistry (EBD), decision aids, patient preferences and autonomy preferences (AP) play an important role in shared decision making (SDM) and are useful tools in the process of medical and dental decisions as well as in developing of quality criteria for decision making in many fields of health care. However, there aren’t many studies on SDM and AP in the field of dentistry. This study aimed at exploring patients’ autonomy preferences in dentistry in comparison to other medical domains. Methods: As a first step, a consecutive sample of 100 dental patients and 16 dentists was recruited at a university-based prosthodontic clinic to assess and compare patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions using the Control Preference Scale (CPS). This was followed by a cross sectional survey to study autonomy preferences in three cohorts of 100 patients each recruited from general practices, a multiple sclerosis clinic, and a university-based prosthodontic clinic . A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in this process. Results: Dentists were slightly less willing to deliver control than patients willing to enact autonomy. Decisions about management of tooth loss were however considered relevant for a shared decision making by both parties. Highest AP was expressed by people with multiple sclerosis, lowest by patients in dentistry (CPS means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p=.035). Patients analysis showed considerable differences in autonomy preferences referring to different decision types (p

Objective: The aim of the present study was to explore patient-related barriers and facilitators towards shared decision-making (SDM) during routine orthopedic outpatient consultations as part of the process of developing a patient decision aid (PDA) for patients with hip osteoarthritis (OA). Methods: Consultations comprising nineteen hip OA patients referred to an orthopedic surgeon for treatment decision-making were observed, audio recorded and transcribed. Iterative thematic analysis proceeded, based on a taxonomy of generic patient-related barriers towards SDM grounded in the Theory of Planned Behavior (TPB). Results: A targeted taxonomy provided a structured overview of 26 factors influencing hip OA patients’ intention to engage in SDM. Patients’ perceived ability to change the agenda of the visit emerged as seminal factor and was added to the generic taxonomy. Conclusion: Using a TPB-based taxonomy, we were able to identify and structure generic and context specific SDM barriers. Addressing patients’ communication self-efficacy should be included as didactic feature in PDAs. Practice Implications: PDAs for hip OA should be designed for the broad spectrum of decision-making support needs occurring throughout the continuum of the disease. The provided taxonomy may contribute as guidance within implementation strategies that aim to support patients’ intentions to engage in SDM. The University of South-Eastern Norway funded this research.

Introduction: While shared decision-making (SDM) training programmes for health professionals have been developed in several countries, few have been evaluated. In Norway, a comprehensive curriculum, “klar for samvalg” (ready for SDM), for interprofessional health-care teams was created using generic didactic methods and guidance to tailor training to various contexts. The programmes adapted didactic methods from an evidence-based German training programmes (doktormitSDM). The overall aim was to evaluate two particular SDM modules on facilitating SDM implementation into clinical practice. Method: A descriptive mixed methods study using questionnaires and a focus group guided by the Medical Research Council Complex Interventions Framework. The training was provided as two different applications (module AB [introduction and SDM-basics] and module ABC [introduction, SDM-basics and interactive training]) with differing learning objectives, extent of interactivity, and duration (1 vs 2 hours). Groups of participants were recruited consecutively based on requests for health professional SDM training in university/college- and hospital-settings. By a focus group and a self-administered questionnaire comprehensibility, relevance and acceptance were assessed and qualitative feedback collected after the training. Data passed descriptive and content analysis, respectively. Knowledge was assessed twice using five multiple-choice items and analysed using paired t-tests.Results: In 11 (six AB and five ABC) training sessions, 357/429 (296 AB and 133 ABC) eligible nurses, physicians and health professional students with varying clinical backgrounds and previous levels of SDM-knowledge participated. SDM-knowledge increased from 25-78% (range pretest) to 85-95% (range post-test) (P ≤ .001). The training was rated easy to understand, acceptable and relevant for practice. Findings to improve the education suggest higher emphasis on interprofessional teaching methods. Conclusions: The two SDM training modules met the basic requirements for use in a broader SDM implementation strategy and can even improve knowledge. The project was funded by the Northern Norway Regional Health Authority and was undertaken as part of the project “DAfactory ‐ Strategies of development, evaluation and implementation of patient treatment decision aids at the University Hospital of North Norway, UNN” (HST1246‐15).

Objective Training to improve physicians’ shared decision making (SDM) competencies with proven effectiveness and efficiency is rare. This study evaluated the brief in situ training module ‘doktormitSDM’. Methods In a multicenter RCT, each physician recorded four consultations, each of which included a diagnostic or treatment decision (N = 152 consultations from seven medical specialties). The doktormitSDM training module included two video-based individual coaching sessions (15 min) at the physicians’ workplaces, supplemented by a manual and a video tutorial. Primary endpoint was the compound measure SDMmass (based on the MAPPIN’SDM system) which incorporates patient and observer perceptions of involvement and doctor-patient concordance on perceived involvement. Results SDMmass increased significantly in the intervention group compared to the controls (effect size 0.58; p= 0.05; t -test). This effect tended to persist at follow-up (effect size 0.63; p=0.06). Patients’ perceived involvement increased accordingly (effect sizes 0.9/.58; p=0.01/.07). Conclusion The doktormitSDM training module is effective and efficient at improving SDM competencies. This is the first SDM training to be evaluated with a compound measure simultaneously considering doctor, patient and observer ratings. Practice implications Owing to its very brief form and its reference to the doctors’ own consultation videos, the doktormitSDM training module meets clinicians’ needs and time constraints.

Norway has traditionally high standards regarding civil rights particularly emphasizing equal access to societal resources including health care. This background and the health care system's centralized national organization make it perfectly suited for implementation of shared decision making (SDM). In recent years, great efforts have been made by policy- makers, regional health authorities and not least the patients to facilitate a process of change in health communication culture. SDM is currently even given highest priority in health care strategies on all system levels. SDM has been structurally implemented, e.g. by including corresponding guidance in the standard patient pathways. Moreover, SDM is established as an element of service on the national health portal hosting a constantly increasing number of decision aids. Essentially the Norwegian Knowledge Center for Health Services contributes by searching and providing information for use in decision aids. Implementation is now being rolled out unit by unit for a list of medical problems as a series production of SDM using decision aids and health professional training. Importantly, production of SDM begins and succeeds as a soundly structured communication with both clinical environments and patients. However, as communication training has not been implemented before now, there are no data demonstrating sufficient realization of SDM in current health care. Beyond making reasonable use of scientific achievements, the Norwegian movement's secret of success is the simultaneous commitment of all actors of the health system to a common idea.

Background Natalizumab (NAT) is associated with the risk of progressive multifocal leukoencephalopathy (PML). Risk stratification algorithms have been developed, however, without detectable reduction of PML incidence. Objective To evaluate to which extent patients and physicians understand and accept risks associated with NAT treatment. Methods Prospective observational cohort study in German MS centers (n = 73) among NAT-treated MS patients (n = 801) and their neurologists (n = 99). Patients included in this study had mean disease duration of 10.2 years and a mean NAT treatment duration of 24 months. Results More than 90% of patients and physicians voted for shared decision making or an informed choice decision making approach. Patients and physicians perceived a similar threat from MS as serious disease and both overestimated treatment benefits from NAT based on trial data. Men perceived MS more severe than women and perception of seriousness increased with age in both groups and in patients as well with increasing disability. Although patients evaluated their PML risk higher, their risk acceptance was significantly higher than of their neurologists. Risk stratification knowledge was good among neurologists and significantly lower among patients. Conclusion While patients and physicians seem to have realistic risk perception of PML and knowledge of risk stratification concepts, the threat of MS and the perception of treatment benefits may explain the ongoing high acceptance of PML risk.

Objective To validate the Norwegian version of MAPPIN'SDM observer scales with regard to reliability, accuracy and the extent to which the scales include the essentials of the shared decision-making concept. Methods Three MAPPIN'SDM scales, focusing on the skills of doctor, patient and dyad, were applied to audiovisual records of 35 decision sequences. Inter-rater reliabilities were determined based on kappa coefficients. Sensitivities and specificities were calculated with regard to an expert reference standard. Convergent validities were calculated with the OPTION 5 scale. MAPPIN'SDM was qualitatively compared to OPTION5 using Makoul & Clayman's Integrative Model structure. Results Inter-rater reliabilities were high on average over 11 items in each of three observer scales (MAPPIN doctor =0.77, MAPPIN patient =0.82, MAPPIN dyad =0.77). Patient involvement was detected accurately (MAPPIN dyad : mean sensitivity/specificity 93/91%). Comparison with OPTION 5 showed weak to moderate correlation (Spearman's ρ/p-value: MAPPIN doctor :=0.44/0.009, MAPPIN patient : 0.38/0.024, MAPPIN dyad 0.40/0.016) and little content overlap. Conclusion MAPPIN'SDM norge is capable of assessing SDM highly reliably and accurately. Divergence from OPTION 5 reflects explicit disagreement regarding the concept's assumptions. Practice implications MAPPIN'SDM norge is ready for use in Norway. In-depth debate on the SDM concept's essentials is urgently needed.

Source at https://doi.org/10.1111/hex.12522. Accepted manuscript version, licensed CC BY-NC-ND 4.0. Objective: Patients making treatment decisions require understandable evidence‐based information. However, evidence on graphical presentation of benefits and side‐effects of medical treatments is not conclusive. The study evaluated a new space‐saving format, CLARIFIG (clarifying risk figures), aiming to facilitate accuracy of comprehension. Methods: CLARIFIG displays groups of patients with and without treatment benefits as coloured sectors of a proportional bar graph representing in total 100 patients. Supplementary icons indicate the corresponding group's actual condition. The study used an application showing effects of immunotherapy intended to slow disease progression in multiple sclerosis (MS). In a four‐arm web‐based randomized controlled trial, CLARIFIG was compared to the reference standard, multifigure pictographs (MFP), regarding comprehension (primary outcome) and processing time. Both formats were presented as static and animated versions. People with MS were recruited through the website of the German MS society. Results: Six hundred and eighty‐two patients were randomized and analysed for the primary end point. There were no differences in comprehension rates (MFPstatic=46%, CLARIFIGstatic=44%; P=.59; MFPanimated=23%, CLARIFIGanimated=30%; P=.134). Processing time for CLARIFIG was shorter only in the animated version (MFPstatic=162 seconds, CLARIFIGstatic=155 seconds; P=.653; MFPanimated=286 seconds, CLARIFIGanimated=189 seconds; P≤.001). However, both animated versions caused more wrong answers and longer processing time than static presentation (MFPstatic vs animated: P≤.001/.001, CLARIFIGstatic vs animated: P=.027/.017). Conclusion: Comprehension of the new format is comparable to MFP. CLARIFIG has the potential to simplify presentation in more complex contexts such as comparison of several treatment options in patient decision aids, but further studies are needed.

Background: Evidence-based Dentistry (EBD), decision aids, patient preferences and autonomy preferences (AP) play an important role in shared decision making (SDM) and are useful tools in the process of medical and dental decisions as well as in developing of quality criteria for decision making in many fields of health care. However, there aren’t many studies on SDM and AP in the field of dentistry. This study aimed at exploring patients’ autonomy preferences in dentistry in comparison to other medical domains. Methods: As a first step, a consecutive sample of 100 dental patients and 16 dentists was recruited at a university-based prosthodontic clinic to assess and compare patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions using the Control Preference Scale (CPS). This was followed by a cross sectional survey to study autonomy preferences in three cohorts of 100 patients each recruited from general practices, a multiple sclerosis clinic, and a university-based prosthodontic clinic. A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in this process. Results: Dentists were slightly less willing to deliver control than patients willing to enact autonomy. Decisions about management of tooth loss were however considered relevant for a shared decision making by both parties. Highest AP was expressed by people with multiple sclerosis, lowest by patients in dentistry (CPS means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p=.035). Patients analysis showed considerable differences in autonomy preferences referring to different decision types (p

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To determine the effects of decision coaching when used to provide non‐directive support to help people prepare to make decisions related to their health care.

Sykepleiere må i større grad bidra til å øke kvaliteten på beslutninger som angår pasientens helse. Samvalg skal være det normale i helsetjenesten, og sykepleiere bør derfor få muligheten til å tilegne seg ny kunnskap og utvikle nye ferdigheter. Både i grunnog videreutdanninger samt i spesialist- og primærhelsetjenesten må vi legge vekt på å utvikle sykepleiernes samvalgskompetanse.

Objective To identify determinants of older patients’ perceptions of involvement in decision-making on colorectal (CRC) or pancreatic cancer (PC) treatment, and to compare these with determinants of observers' perceptions. Methods Patients’ perceptions of involvement were constructed by the 9-item SDM questionnaire (SDM-Q-9) and a Visual Analogue Scale for Involvement (VAS-I). Observers’ perceptions were constructed by the OPTION5, OPTION12, and MAPPIN’SDM. Convergent validities were calculated between the patient-sided and observer instruments using Spearman’s correlation coefficient. Linear regression was used to identify determinants per criterion. Results 58 CRC and 22 PC patients were included (mean age: 71.8 ± 5.2 years, 45.0% female). No significant correlations were found between the patient-sided and observer instruments. Patients’ impression of involvement was influenced by patient characteristics such as quality of life and satisfaction, while observers’ perceptions mainly referred to encounter characteristics such as the mean duration of consultations and general communication skills. Conclusion Due to evident differences in determinants, older CRC/PC patients’ and observers’ perceptions of involvement should both be collected in evaluating the quality of medical decision-making. Practice Implications General communication skills should be integrated in SDM training interventions. New SDM measurement tools for patients are needed to sufficiently discriminate between the constructs of involvement and satisfaction.

Background Treatment decision-making is complex for people with multiple sclerosis. Profound information on available options is virtually not possible in regular neurologist encounters. The "nurse decision coach model" was developed to redistribute health professionals' tasks in supporting immunotreatment decision-making following the principles of informed shared decision-making. Objectives To test the feasibility of a decision coaching programme and recruitment strategies to inform the main trial. Design Feasibility testing and parallel pilot randomised controlled trial, accompanied by a mixed methods process evaluation. Setting Two German multiple sclerosis university centres. Participants pilot trial People with suspected or relapsing-remitting multiple sclerosis facing immunotreatment decisions on first line drugs were recruited. Randomisation to the intervention (n = 38) or control group (n = 35) was performed on a daily basis. Quantitative and qualitative process data were collected from people with multiple sclerosis, nurses and physicians. Methods We report on the development and piloting of the decision coaching programme. It comprises a training course for multiple sclerosis nurses and the coaching intervention. The intervention consists of up to three structured nurse-led decision coaching sessions, access to an evidence-based online information platform (DECIMS-Wiki) and a final physician consultation. After feasibility testing, a pilot randomised controlled trial was performed. People with multiple sclerosis were randomised to the intervention or control group. The latter had also access to the DECIMS-Wiki, but received otherwise care as usual. Nurses were not blinded to group assignment, while people with multiple sclerosis and physicians were. The primary outcome was ‘informed choice' after six months including the sub-dimensions' risk knowledge (after 14 days), attitude concerning immunotreatment (after physician consultation), and treatment uptake (after six months). Quantitative process evaluation data were collected via questionnaires. Qualitative interviews were performed with all nurses and a convenience sample of nine people with multiple sclerosis. Results 116 people with multiple sclerosis fulfilled the inclusion criteria and 73 (63%) were included. Groups were comparable at baseline. Data of 51 people with multiple sclerosis (70%) were available for the primary endpoint. In the intervention group 15 of 31 (48%) people with multiple sclerosis achieved an informed choice after six months and 6 of 20 (30%) in the control group. Process evaluation data illustrated a positive response towards the coaching programme as well as good acceptance. Conclusions The pilot-phase showed promising results concerning acceptability and feasibility of the intervention, which was well perceived by people with multiple sclerosis, most nurses and physicians. Delegating parts of the immunotreatment decision-making process to trained nurses has the potential to increase informed choice and participation as well as effectiveness of patient-physician consultations.

Source at https://doi.org/10.1111/hex.12565. Accepted manuscript version, licensed CC BY-NC-ND 4.0. Objective: To carry out preliminary evaluation of a training module for doctors to enhance their ability to involve their patients in medical decision making. The training refers to the shared decision-making (SDM) communication concept. Methods: The training module includes a comprehensive manual, a corresponding video tutorial with communication examples and a 15-minute face-to-face feedback session based on an SDM analysis of a consultation recording provided by the trainee. Ten trainees (four neurologists, three dentists, and three general practitioners) participating in the pretest each recorded four clinical consultations (total sample: N=40) and received three training components. After the training, doctors provided feedback on the module’s feasibility in a questionnaire. Communication performance of doctors, patients and doctor–patient dyads was assessed by trained observers and selfassessed by doctors and patients using the MAPPIN’SDM approach. Training effects were determined using Wilcoxon signed-rank tests comparing baseline values with post-intervention performance as assessed in the fourth consultations. Results: The face-to-face training sessions were short and feasible with regard to clinical reality. Participants considered the training supportive for acquiring SDM skills and recommended more emphasis on the face-to-face feedback. Communication improved according to observers rating doctors (P=.05) and doctor–patient dyads (P=.07) and to doctors’ own judgements (P=.02). No improvement was observed in patients’ SDM behaviour (P=.11); accordingly, patients’ judgements did not indicate improvement (P=.14). Conclusions: The training is designed to meet clinicians’ needs. Improvement of risk communication after training encourages optimization according to doctors’ feedback. Following this study, the efficacy of the training is now being examined in a randomized controlled trial.

To evaluate the efficacy of an evidence-based patient information programme aiming to increase informed choice in patients with early multiple sclerosis (MS).Patients with early MS face a number of uncertainties concerning diagnosis, prognosis and effectiveness of immunotherapy. Prior studies suggest that evidence-based patient information combined with group education can promote informed choice in MS patients.A 12-month, six-centre, double-blind randomised controlled clinical trial with 192 patients with a diagnosis of confirmed relapsing-remitting MS or clinical isolated syndrome in Germany. A 4-h interactive evidence-based educational programme was compared with a 4-h MS-specific stress management programme. The primary endpoint was informed choice after 6 months comprising risk knowledge and congruency between attitude towards immunotherapy and actual immunotherapy uptake. Secondary endpoints included autonomy preference, decision autonomy, decisional conflict and satisfaction, anxiety and depression, and number of immunotherapies.For the primary endpoint, a significant difference was shown with 50 of 85 (59%) participants in the intervention group achieving informed choice after 6 months compared with 18 of 89 (20%) in the control group (OR 0.2 (95% CI 0.1 to 0.4), p0.001). Four weeks after the intervention, more participants in the intervention group showed good risk knowledge (difference between groups 39% (95% CI 26% to 53%), p0.001). There were no significant differences between groups for attitude towards immunotherapy and for immunotherapy uptake. There were trends towards increased autonomy preference after the intervention and increased adherence to immunotherapies in the intervention group.The intervention significantly increased informed choice and relevant risk knowledge without negative side effects.

Christina Riechel,1,* Anna Christina Alegiani,1,* Sascha Köpke,2 Jürgen Kasper,3,4 Michael Rosenkranz,1,5 Götz Thomalla,1 Christoph Heesen1,4 1Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 2Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany; 3Department of Health and Caring Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway; 4Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; 5Department of Neurology, Albertinen-Krankenhaus, Hamburg, Germany *These authors contributed equally tothis work Background: Risk knowledge and active role preferences are important for patient involvement in treatment decision-making and adherence. Although knowledge about stroke warning signs and risk factors has received considerable attention, objective knowledge on secondary prevention and further self-esteem subjective knowledge have rarely been studied. The aim of our study was to investigate knowledge and treatment decisional role preferences in cerebrovascular patients compared to controls. Methods: We performed a survey on subjective and objective stroke risk knowledge and autonomy preferences in cerebrovascular patients from our stroke outpatient clinic (n=262) and from pedestrians on the street taken as controls during a “World Stroke Day” (n=274). The questionnaire includes measures for knowledge and decisional role preferences from previously published questionnaires and newly developed measures, for example, subjective knowledge, revealed on a visual analog scale. Results: The overall stroke knowledge was low to moderate, with no differences between patients and controls. Knowledge about secondary prevention was particularly low. Only 10%–15% of participants correctly estimated the stroke absolute risk reduction potential of aspirin. The medical data interpretation competence was moderate in both groups. Age and basic mathematical and statistical understanding (numeracy) were the only independent predictors of objective stroke knowledge, whereas previous stroke had no impact on stroke knowledge. However, patients were thought to be better informed than controls. Approximately 60% of both patients and controls claimed to prefer a shared decision-making approach in treatment decisions. Conclusion: The level of stroke risk knowledge in patients with cerebrovascular diseases was as low as in randomly selected pedestrians, although patients felt better informed. Both groups preferred involvement in treatment decision-making. We conclude that educational concepts for increasing awareness of knowledge gaps as well as for stroke risk and for prevention strategies are needed. Keywords: knowledge, decisional role preferences, cerebrovascular patients, stroke

Objective: To investigate the effectiveness of a multi-component evidence-based education programme on disease modifying therapies in multiple sclerosis. Design: Controlled trial with two consecutive patient cohorts and a gap of two months between cohorts. Setting: Three neurological rehabilitation centres. Subjects: Patients with multiple sclerosis within rehabilitation. Interventions: Control group (CG) participants were recruited and received standard information. Two months later, intervention group (IG) participants were recruited and received a six-hour nurse-led interactive group education programme consisting of two parts and a comprehensive information brochure. Main measures: Primary endpoint was “informed choice”, comprising of adequate risk knowledge in combination with congruency between attitude towards immunotherapy and actual immunotherapy uptake. Further outcomes comprised risk knowledge, decision autonomy, anxiety and depression, self-efficacy, and fatigue. Results: A total of 156 patients were included (IG=75, CG=81). The intervention led to significantly more participants with informed choice (IG: 47% vs. CG: 23%, P=0.004). The rate of persons with adequate risk knowledge was significantly higher in the IG two weeks after the intervention (IG: 54% vs. CG: 31%, P=0.007), but not after six months (IG: 48% vs. CG: 31%, P=0.058). No significant differences were shown for positive attitude towards disease modifying therapy (IG: 62% vs. CG: 71%, P=0.29) and for disease modifying therapy status after six months (IG: 61.5% vs CG: 68.6%, P=0.39). Also no differences were found for autonomy preferences and decisional conflict after six months. Conclusion: Delivering evidence-based information on multiple sclerosis disease modifying therapies within a rehabilitation setting led to a marked increase of informed choices.

Background: Balancing treatment benefits and risks is part of a shared decision-making process before initiating any treatment in multiple sclerosis (MS). Patients understand, appreciate and profit from evidence-based patient information (EBPI). While these processes are well known, long-term risk awareness and risk processing of patients has not been studied. Mitoxantrone treatment in MS is associated with long-term major potential harms – leukaemia (LK) and cardiotoxicity (CT). The risk knowledge and perception among patients currently or previously treated with mitoxantrone is unknown. Objectives: The objective of this article is to conduct a retrospective cohort study in greater Hamburg, Germany, to estimate risk awareness and perception in MS patients treated with mitoxantrone. Methods: MS patients with at least one dose of mitoxantrone between 1991 and 2010 from six major MS centres in greater Hamburg received a questionnaire assessing risk awareness and perception as well as a written EBPI about mitoxantrone-associated LK and CT. Results: Fifty-one per cent in the cohort of n = 575 patients returned the questionnaire. Forty per cent correctly estimated the risk of LK (CT 16%); 56% underestimated the risk (CT 82%). Reading the information increased the accuracy of LK risk estimation, and patients did not report an increase of worries. The EBPI was appreciated and recommended by 85%. Conclusion: Risk awareness of mitoxantrone-treated patients is insufficient, but can be increased by EBPI without increasing worries. Continued patient information during and after treatment should be implemented in management algorithms.

Managing uncertainty is a major challenge associated with the diagnosis of multiple sclerosis (MS). In addition to physical symptoms, neuropsychiatric symptoms are highly prevalent in this disease. Depression in particular is more common in MS than in other chronic diseases. While substantial achievements have been made in the therapy of MS and an increasing number of immunomodulatory treatments are now available, the long-term benefits of these are still a matter of debate. Importantly, while the approved therapies show good efficacy on inflammatory lesions and relapse rate, and may slow certain aspects of disease progression, improvements in function have rarely been reported. On the other hand, behavioral interventions have recently been shown to significantly improve fatigue and depression as well as motor function. In addition, recent evidence suggests that group education or face-to-face behavioral interventions may decrease inflammatory disease activity (such as relapse rate or lesion formation measured by MRI). Therefore, behavioral interventions not only ameliorate symptoms but may have the potential to modify the disease process itself.

Summary Objective Shared decision making (SDM) between patient and physician is an interpersonal process. Most SDM measures use the view of one party (patient, physician or observer) as a proxy to capture this process although these views typically diverge. This study suggests the compound measure SDM MASS ( SDM M eeting its concept's ASS umptions) integrating these three perspectives in one single index. Methods SDM MASS was derived theoretically and compared empirically to unilateral perspectives of patients, physicians and observers by application to a data set of 10 physicians (40 consultations) receiving an SDM training. Results The constituting parts of SDM MASS were highly reliable (Cronbach's alpha .94; interrater reliability .74-.87). Unilateral appraisal of training effects was divergent. SDM MASS revealed no effect. Conclusion SDM MASS combines noteworthy information about SDM processes from different viewpoints and thereby delivers plausible assessments. It could overcome immanent shortcomings of unilateral approaches. However, it is a complex measure needing further validation.

Objective To study the implementation of a patient education program on relapses and relapse therapy into routine care. Methods 31 health care professionals took part in a one day train-the-trainer program (TTTP) and subsequently 261 persons with MS (pwMS) took part in the education program. Evaluation was carried out in trainers and pwMS. Results Participants (health professionals) in the TTTP understood the program's main goals and reported that the TTTP enabled them to successfully perform the program. The majority of participants in the program (pwMS) understood the core messages. Also, they showed increased risk knowledge and increased decision autonomy preferences. Treatment decisions were reported as autonomous or as “informed choice” in 49%, and as “shared decisions” by 45%. Overall, effects were less marked compared to the results of the underlying randomized-controlled trial. Conclusion PwMS! appreciate evidence-based information about relapse management and view the unbiased presentation of scientific uncertainty as a chance for decision autonomy. Practice implications The implementation study confirms the program's transferability into clinical practice.

Shared decision making (SDM) is being increasingly challenged for promoting an innovative role model while adhering to an archaic approach to patient-clinician communication, both in clinical practice and the research field. Too often, SDM has been studied at the individual level, which ignores the interpersonal system between patients and physicians. We aimed to encourage debate by reflecting on the essentials of SDM in terms of epistemology. We operationalized the SDM core concept of information exchange in terms of social systems theory. An epistemological analysis of the term information refers to its inherent process character. Exchange of information thereby becomes synonymous with social sense construction, indicating that, rather than just being a vehicle, the act of communication itself is the information. We plead for the adoption of existing dyadic analytical methods such as those offered by the interpersonal paradigm. Implications of an updated concept of information for the use of SDM-evaluation methods, for SDMgoal setting, and for clinical practice of SDM are described.