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Shared decision making has been on the policy agenda in the UK for at least twelve years, but it lacked a comprehensive approach to delivery. That has changed over the past five years, and we can now see significant progress across all aspects of a comprehensive approach, including leadership at policy, professional and patient levels; infrastructure developments, including the provision of training, tools and campaigns; and practice improvements, such as demonstrations, measurement and coordination. All these initiatives were necessary, but the last, central coordination, would appear to be key to success., (Copyright © 2022. Published by Elsevier GmbH.)

Purpose: Adolescents living with long-term conditions (LTCs) often feel as though they are left out of discussions and decisions with healthcare professionals, which can give them the impression that their views are not important. Research around decision-making during clinical encounters often fails to represent adolescents' perspectives. This study explores adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making (SDM)., Methods: Nineteen adolescents (aged 13-19 years) with LTCs were recruited from endocrinology, rheumatology, neurology, and nephrology clinics. Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analyzed thematically., Results: Four overarching themes and nine sub-themes were identified which describe barriers and facilitators around SDM. Adolescents need to feel, as though their involvement is supported by parents and healthcare professionals, that their contribution to the decision-making process is important and will yield a positive outcome. Adolescents often feel it is their right to be involved in decisions that affect them but also feel as though the adults' contributions to the decisions are considered more valuable. Adolescents need to feel capable of being involved, in terms of being able to understand and process information about the available options and ask appropriate questions., Conclusions: This work highlights a number of ways SDM can be facilitated between healthcare practitioners and adolescents with LTCs. Identifying the needs of adolescents with LTCs is necessary for optimizing the SDM process and to support them during healthcare consultations., (Copyright © 2019 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice., Aims and Design: This systematic review aimed to (a) identify the range of patients' decision-making needs and (b) assess the extent to which patient decision aids address these needs., Data Sources: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990-January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed 'addressable'., Results: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 'addressable' needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate., Conclusion: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

Background: Proven benefits of Shared Decision Making (SDM) include improved patient knowledge, involvement and confidence in making decisions. Although widely advocated in policy, SDM is still not widely implemented in practice. A common patient-reported barrier is feeling that "doctor knows best"; thus, patients often defer decisions to the clinician., Objective: To examine the nature of the discourse when patients ask clinicians for a treatment recommendation during consultations when treatment decisions are being shared and to examine clinicians' strategies used in response., Design, Setting and Participants: Theme-orientated discourse analysis was performed on eight audio-recordings of breast cancer diagnostic consultations in which patients or their partners attempted to defer treatment decisions to the clinician. Clinicians were trained in SDM., Results: Tension was evident in a number of consultations when treatment recommendations were requested. Clinicians responded to recommendation requests by explaining why the decision was being shared (personal nature of the decision, individual preferences and equivalent survival outcomes of treatment options). There was only one instance where a clinician gave a treatment recommendation., Discussion and Conclusions: Strategies for clinicians to facilitate SDM when patients seem to defer decisional responsibility include being clear about why the decision is being shared, acknowledging that this is difficult and making patients feel supported. When patients seek guidance, clinicians can provide a recommendation if grounded in an understanding of the patient's values., (© 2019 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Objective: To understand the preferences and experiences of adolescents (age 10-19) with long-term conditions (LTCs) towards involvement in discussions and decisions regarding management of their condition., Methods: A systematic review and narrative synthesis of mixed-methods, quantitative and qualitative and research was performed. Six databases were searched from inception to March 2017. The quality of the articles was assessed, and relevant data were extracted and coded thematically., Results: The search yielded 27 articles which met the inclusion criteria. Decision-making involvement preferences and experiences were reported from the adolescents' perspectives. Adolescents often report that they do not have any choice of treatment options. Variability in preferences and experiences were found within and between individuals. Mismatches between preferences and experiences are common, and often with negative emotional consequences., Discussion: Adolescent preferences for involvement in the decision-making process are situational and individualistic. Healthcare professionals can encourage involvement by ensuring that adolescents are informed of treatment options, and aware of the value of their contribution. Future research should explore adolescent perceived barriers and facilitators to SDM., Practical Implications: Interventions are needed to effectively train HCPs in the delivery of shared decision-making, and to support the participation of adolescents with LTCs in shared decision-making., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and declare the following interests. AE reports personal fees outside the submitted work, for the delivery of shared decision making training to clinicians in primary care organisations in England and Wales. He has also received royalties for editing Shared Decision Making in Healthcare: Achieving Evidence Based Patient Choice (Oxford University Press). GE reports personal fees outside the submitted work from Emmi Solutions, National Quality Forum, and Washington State Health Department. He has also received royalties for editing Shared Decision Making in Healthcare: Achieving Evidence Based Patient Choice (Oxford University Press) and Groups (Radcliffe Press). GE initiated and led the Option Grid Collaborative, which produces and publishes patient knowledge tools (http://optiongrid.org/). He has been a member of teams that have developed measures of shared decision making and care integration. These tools and measures are published and are available for use. For further information see http://www.glynelwyn.com/. DT reports personal fees outside the submitted work for the delivery of lectures on shared decision making to professionals, funded by TEVA, and from workshops and seminars on shared decision making to various organisations in the north east of England.

Objective: Patient decision support interventions are not currently subject to standardized quality control. The current study aims to assess the feasibility of applying a proposed set of minimum standards (previously developed as part of a possible certification process) to a selection of existing patient decision support interventions., Methods: A convenience sample of interventions selected from those included in the 2009 Cochrane systematic review of patient decision aids was scored by trained raters using the International Patient Decision Aids Standards (IPDAS) instrument. Scores were then evaluated against the published proposed minimum standards., Results: Twenty-five out of thirty included interventions met all qualifying criteria while only three met the proposed certification criteria. The changes required for an intervention to meet the proposed certification standards were relatively minor. There was considerable variation between raters' mean scores., Conclusions: Most interventions did not meet the certification criteria due to lack of information on modifiable items such as update policy and funding source., Practice Implications: Specifying minimum standards for patient decision support interventions is a feasible development. However, it remains unclear whether the minimum standards can be applied to interventions designed for use within clinical encounters and to those that target screening and diagnostic tests., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

Objective: The IPDAS Collaboration has developed a checklist and an instrument (IPDASi v3.0) to assess the quality of patient decision aids (PDAs) in terms of their development process and shared decision-making design components. Certification of PDAs is of growing interest in the US and elsewhere. We report a modified Delphi consensus process to agree on IPDASi (v3.0) items that should be considered as minimum standards for PDA certification, for inclusion in the refined IPDASi (v4.0)., Methods: A 2-stage Delphi voting process considered the inclusion of IPDASi (v3.0) items as minimum standards. Item scores and qualitative comments were analyzed, followed by expert group discussion., Results: One hundred and one people voted in round 1; 87 in round 2. Forty-seven items were reduced to 44 items across 3 new categories: 1) qualifying criteria, which are required in order for an intervention to be considered a decision aid (6 items); 2) certification criteria, without which a decision aid is judged to have a high risk of harmful bias (10 items); and 3) quality criteria, believed to strengthen a decision aid but whose omission does not present a high risk of harmful bias (28 items)., Conclusions: This study provides preliminary certification criteria for PDAs. Scoring and rating processes need to be tested and finalized. However, the process of appraising the quality of the clinical evidence reported by the PDA should be used to complement these criteria; the proposed standards are designed to rate the quality of the development process and shared decision-making design elements, not the quality of the PDA's clinical content., (© The Author(s) 2013.)

Background: This review systematically appraises the quality of reporting of measures used in trials to evaluate the effectiveness of patient decision aids (PtDAs) and presents recommendations for minimum reporting standards., Methods: We reviewed measures of decision quality and decision process in 86 randomized controlled trials (RCTs) from the 2011 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 reviewers., Results: Information from 178 instances of use of measures was abstracted. Very few studies reported data on the performance of measures, with reliability (21%) and validity (16%) being the most common. Studies using new measures were less likely to include information about their psychometric performance. The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications., Conclusions: Very little is reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards are proposed to enable authors to prepare study reports, editors and reviewers to evaluate submitted papers, and readers to appraise published studies., (© The Author(s) 2014.)

Objective: To systematically review patient-reported barriers and facilitators to shared decision making (SDM) and develop a taxonomy of patient-reported barriers., Methods: Systematic review and thematic synthesis. Study findings/results for each included paper were extracted verbatim and entered into qualitative software for inductive analysis., Results: Electronic and follow-up searches yielded 2956 unique references; 289 full-text articles were retrieved, of which 45 articles from 44 unique studies met inclusion criteria. Key descriptive themes were grouped under two broad analytical themes: how the healthcare system is organized (4 descriptive themes) and what happens during the decision-making interaction (4 descriptive themes, 10 sub-themes). Predominant emergent themes related to patients' knowledge and the power imbalance in the doctor-patient relationship. Patients need knowledge and power to participate in SDM - knowledge alone is insufficient and power is more difficult to attain., Conclusion: Many barriers are potentially modifiable, and can be addressed by attitudinal changes at the levels of patient, clinician/healthcare team, and the organization. The results support the view that many patients currently can't participate in SDM, rather than they won't participate because they do not want to., Practice Implications: Future implementation efforts should address patient-reported factors together with known clinician-reported barriers and the wider organizational context., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Background: Implementing shared decision making into routine practice is proving difficult, despite considerable interest from policy-makers, and is far more complex than merely making decision support interventions available to patients. Few have reported successful implementation beyond research studies. MAking Good Decisions In Collaboration (MAGIC) is a multi-faceted implementation program, commissioned by The Health Foundation (UK), to examine how best to put shared decision making into routine practice. In this paper, we investigate healthcare professionals' perspectives on implementing shared decision making during the MAGIC program, to examine the work required to implement shared decision making and to inform future efforts., Methods: The MAGIC program approached implementation of shared decision making by initiating a range of interventions including: providing workshops; facilitating development of brief decision support tools (Option Grids); initiating a patient activation campaign ('Ask 3 Questions'); gathering feedback using Decision Quality Measures; providing clinical leads meetings, learning events, and feedback sessions; and obtaining executive board level support. At 9 and 15 months (May and November 2011), two rounds of semi-structured interviews were conducted with healthcare professionals in three secondary care teams to explore views on the impact of these interventions. Interview data were coded by two reviewers using a framework derived from the Normalization Process Theory., Results: A total of 54 interviews were completed with 31 healthcare professionals. Partial implementation of shared decision making could be explained using the four components of the Normalization Process Theory: 'coherence,' 'cognitive participation,' 'collective action,' and 'reflexive monitoring.' Shared decision making was integrated into routine practice when clinical teams shared coherent views of role and purpose ('coherence'). Shared decision making was facilitated when teams engaged in developing and delivering interventions ('cognitive participation'), and when those interventions fit with existing skill sets and organizational priorities ('collective action') resulting in demonstrable improvements to practice ('reflexive monitoring'). The implementation process uncovered diverse and conflicting attitudes toward shared decision making; 'coherence' was often missing., Conclusions: The study showed that implementation of shared decision making is more complex than the delivery of patient decision support interventions to patients, a portrayal that often goes unquestioned. Normalizing shared decision making requires intensive work to ensure teams have a shared understanding of the purpose of involving patients in decisions, and undergo the attitudinal shifts that many health professionals feel are required when comprehension goes beyond initial interpretations. Divergent views on the value of engaging patients in decisions remain a significant barrier to implementation.

Objective: To describe the exploratory use of short decision support tools for patients, called Option Grids. Option Grids are summary tables, using one side of paper to enable rapid comparisons of options, using questions that patients frequently ask (FAQs) and designed for face-to-face clinical encounters. To date, most evidence about 'patient decision aids' has been based on tools with high content levels, designed for patients to use independently, either before or after visits., Methods: We studied the use of Option Grids in a quality improvement project, collecting field notes and conducting interviews with clinical teams., Results: In the 'Making Good Decisions in Collaboration' (MAGIC) program, clinicians found that using Option Grids made it easier to explain the existence of options and reported a 'handover' effect, where patient involvement in decision making was enhanced., Conclusion: Option Grids made options more visible and clinicians found it easier to undertake shared decision making when these tools were available. Used in a collaborative way, they enhance patients' confidence and voice, increasing their involvement in collaborative dialogs., Practice Implications: Further work to confirm these preliminary findings is required, to measure processes and to assess whether these tools have similar impact in other clinical settings., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Background: Establishing the effectiveness of patient decision aids (PtDA) requires evidence that PtDAs improve the quality of the decision-making process and the quality of the choice made, or decision quality. The aim of this paper is to review the theoretical and empirical evidence for PtDA effectiveness and discuss emerging practical and research issues in the measurement of effectiveness., Methods: This updated overview incorporates: a) an examination of the instruments used to measure five key decision-making process constructs (i.e., recognize decision, feel informed about options and outcomes, feel clear about goals and preferences, discuss goals and preferences with health care provider, and be involved in decisions) and decision quality constructs (i.e., knowledge, realistic expectations, values-choice agreement) within the 86 trials in the Cochrane review; and b) a summary of the 2011 Cochrane Collaboration's review of PtDAs for these key constructs. Data on the constructs and instruments used were extracted independently by two authors from the 86 trials and any disagreements were resolved by discussion, with adjudication by a third party where required., Results: The 86 studies provide considerable evidence that PtDAs improve the decision-making process and decision quality. A majority of the studies (76/86; 88%) measured at least one of the key decision-making process or decision quality constructs. Seventeen different measurement instruments were used to measure decision-making process constructs, but no single instrument covered all five constructs. The Decisional Conflict Scale was most commonly used (n = 47), followed by the Control Preference Scale (n = 9). Many studies reported one or more constructs of decision quality, including knowledge (n = 59), realistic expectation of risks and benefits (n = 21), and values-choice agreement (n = 13). There was considerable variability in how values-choice agreement was defined and determined. No study reported on all key decision-making process and decision quality constructs., Conclusions: Evidence of PtDA effectiveness in improving the quality of the decision-making process and decision quality is strong and growing. There is not, however, consensus or standardization of measurement for either the decision-making process or decision quality. Additional work is needed to develop and evaluate measurement instruments and further explore theoretical issues to advance future research on PtDA effectiveness.

The principles of shared decision making are well documented but there is a lack of guidance about how to accomplish the approach in routine clinical practice. Our aim here is to translate existing conceptual descriptions into a three-step model that is practical, easy to remember, and can act as a guide to skill development. Achieving shared decision making depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision making process. To accomplish these tasks, we propose a model of how to do shared decision making that is based on choice, option and decision talk. The model has three steps: a) introducing choice, b) describing options, often by integrating the use of patient decision support, and c) helping patients explore preferences and make decisions. This model rests on supporting a process of deliberation, and on understanding that decisions should be influenced by exploring and respecting "what matters most" to patients as individuals, and that this exploration in turn depends on them developing informed preferences.

Unlabelled: BACKGROUND OR CONTEXT: Regret is a common consequence of decisions, including those decisions related to individuals' health. Several assessment instruments have been developed that attempt to measure decision regret. However, recent research has highlighted the complexity of regret. Given its relevance to shared decision making, it is important to understand its conceptualization and the instruments used to measure it., Objectives: To review current conceptions of regret. To systematically identify instruments used to measure decision regret and assess whether they capture recent conceptualizations of regret., Search Strategy: Five electronic databases were searched in 2008. Search strategies used a combination of MeSH terms (or database equivalent) and free text searching under the following key headings: 'Decision' and 'regret' and 'measurement'. Follow-up manual searches were also performed., Inclusion Criteria: Articles were included if they reported the development and psychometric testing of an instrument designed to measure decision regret, or the use of a previously developed and tested instrument., Main Results: Thirty-two articles were included: 10 report the development and validation of an instrument that measures decision regret and 22 report the use of a previously developed and tested instrument. Content analysis found that existing instruments for the measurement of regret do not capture current conceptualizations of regret and they do not enable the construct of regret to be measured comprehensively., Conclusions: Existing instrumentation requires further development. There is also a need to clarify the purpose for using regret assessment instruments as this will, and should, focus their future application., (© 2010 The Authors. Health Expectations © 2010 Blackwell Publishing Ltd.)

Objectives: To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids)., Design: Scale development study, involving construct, item and scale development, validation and reliability testing., Setting: There has been increasing use of decision support technologies--adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation., Methods: Scale development study, involving construct, item and scale development, validation and reliability testing., Participants: Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies., Results: IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92)., Conclusions: This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark.