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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. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic demonstrated the vital need for research to inform policy decision-making and save lives. The Wales COVID-19 Evidence Centre (WCEC) was established in March 2021 and funded for two years, to make evidence about the impact of the pandemic and ongoing research priorities for Wales available and actionable to policy decision-makers, service leads and the public., Objectives: We describe the approaches we developed and our experiences, challenges and future vision., Program Implementation: The centre operated with a core team, including a public partnership group, and six experienced research groups as collaborating partners. Our rapid evidence delivery process had five stages: 1. Stakeholder engagement (continued throughout all stages); 2. Research question prioritisation; 3. Bespoke rapid evidence review methodology in a phased approach; 4. Rapid primary research; and 5. Knowledge Mobilisation to ensure the evidence was available for decision-makers., Main Achievements: Between March 2021-23 we engaged with 44 stakeholder groups, completed 35 Rapid Evidence Reviews, six Rapid Evidence Maps and 10 Rapid Evidence Summaries. We completed four primary research studies, with three published in peer reviewed journals, and seven ongoing. Our evidence informed policy decision-making and was cited in 19 Welsh Government papers. These included pandemic infection control measures, the Action Plan to tackle gender inequalities, and Education Renew and Reform policy. We conducted 24 Welsh Government evidence briefings and three public facing symposia., Policy Implications: Strong engagement with stakeholder groups, a phased rapid evidence review approach, and primary research to address key gaps in current knowledge enabled high-quality efficient, evidence outputs to be delivered to help inform Welsh policy decision-making during the pandemic. We learn from these processes to continue to deliver evidence from March 2023 as the Health and Care Research Wales Evidence Centre, with a broader remit of health and social care, to help inform policy and practice decisions during the recovery phase and beyond., (© 2024. The Author(s).)

Competing Interests: Competing interests: GE works with EBSCO Information Services on Option Grid conversation aids.

Background: There is a focus on increasing asynchronous telemedicine use, which allows medical data to be transmitted, stored, and interpreted later; however, limited evidence of the quality of care it allows in general practice hinders its use., Aim: To investigate uses and effectiveness of asynchronous telemedicine in general practice, according to the domains of healthcare quality, and describe how the COVID-19 pandemic changed its use., Design & Setting: Systematic review in general practice., Method: A systematic search was carried out across four databases using terms related to general practice, asynchronous telemedicine, uses, and effectiveness, and supported by citation searching. This was followed by screening according to pre-defined criteria, data extraction, and critical appraisal. Narrative synthesis was then undertaken guided by the six domains of healthcare quality and exploring differences in use before and following the COVID-19 pandemic., Results: Searches yielded 6864 reports; 27 reports from 23 studies were included. Asynchronous telemedicine is used by a range of staff and patients across many countries. Safety and equity are poorly reported but there were no major safety concerns. Evidence from other domains of healthcare quality show effectiveness in making diagnoses, prescribing medications, replacing other consultations, providing timely care, and increased convenience for patients. Efficiency is impacted by negative effects on workflow, through poor implementation and patient non-adherence, limiting usability and requiring new administrative approaches from healthcare staff. Asynchronous telemedicine use increased rapidly from March 2020, following the COVID-19 pandemic outbreak., Conclusion: Asynchronous telemedicine provides quality care for patients but is limited by reports of increased workload and inefficient workflow compared with face-to-face consultations. Limits of evidence include heterogeneity and small-scale studies. Further research into cost-effectiveness, equity, safety, and sustained implementation will influence future policy and practice., (Copyright © 2024, The Authors.)

Background: The COVID-19 pandemic resulted in major disruption to healthcare delivery worldwide causing medical services to adapt their standard practices. Learning how these adaptations result in unintended patient harm is essential to mitigate against future incidents. Incident reporting and learning system data can be used to identify areas to improve patient safety. A classification system is required to make sense of such data to identify learning and priorities for further in-depth investigation. The Patient Safety (PISA) classification system was created for this purpose, but it is not known if classification systems are sufficient to capture novel safety concepts arising from crises like the pandemic. We aimed to review the application of the PISA classification system during the COVID-19 pandemic to appraise whether modifications were required to maintain its meaningful use for the pandemic context., Methods: We conducted a mixed-methods study integrating two phases in an exploratory, sequential design. This included a comparative secondary analysis of patient safety incident reports from two studies conducted during the first wave of the pandemic, where we coded patient-reported incidents from the UK and clinician-reported incidents from France. The findings were presented to a focus group of experts in classification systems and patient safety, and a thematic analysis was conducted on the resultant transcript., Results: We identified five key themes derived from the data analysis and expert group discussion. These included capitalising on the unique perspective of safety concerns from different groups, that existing frameworks do identify priority areas to investigate further, the objectives of a study shape the data interpretation, the pandemic spotlighted long-standing patient concerns, and the time period in which data are collected offers valuable context to aid explanation. The group consensus was that no COVID-19-specific codes were warranted, and the PISA classification system was fit for purpose., Conclusions: We have scrutinised the meaningful use of the PISA classification system's application during a period of systemic healthcare constraint, the COVID-19 pandemic. Despite these constraints, we found the framework can be successfully applied to incident reports to enable deductive analysis, identify areas for further enquiry and thus support organisational learning. No new or amended codes were warranted. Organisations and investigators can use our findings when reviewing their own classification systems., (© 2023. BioMed Central Ltd., part of Springer Nature.)

In biomedical research, there is no situation where public engagement (PE) and public involvement (PI) are not possible, important or even expected. Whether we work in the clinic or in the laboratory, all researchers have a duty to reach out, demonstrate the added value that science brings to society, and make a real difference to the way research is done. Here we outline the benefits of PE and PI for individual researchers and their employers, for members of the public, and for society at large. We offer solutions to overcome major challenges, including a step-by-step guide for researchers to embrace PE and PI in their career, and make a call to action for a cultural shift towards embedding PE and PI in our modern academic environment., (© 2023 the Australian and New Zealand Society for Immunology, Inc.)

The uptake of COVID-19 vaccination in Wales is high at a population level but many inequalities exist. Household composition may be an important factor in COVID-19 vaccination uptake due to the practical, social, and psychological implications associated with different living arrangements. In this study, the role of household composition in the uptake of COVID-19 vaccination in Wales was examined with the aim of identifying areas for intervention to address inequalities. Records within the Wales Immunisation System (WIS) COVID-19 vaccination register were linked to the Welsh Demographic Service Dataset (WDSD; a population register for Wales) held within the Secure Anonymised Information Linkage (SAIL) databank. Eight household types were defined based on household size, the presence or absence of children, and the presence of single or multiple generations. Uptake of the second dose of any COVID-19 vaccine was analysed using logistic regression. Gender, age group, health board, rural/urban residential classification, ethnic group, and deprivation quintile were included as covariates for multivariable regression. Compared to two-adult households, all other household types were associated with lower uptake. The most significantly reduced uptake was observed for large, multigenerational, adult group households (aOR 0.45, 95%CI 0.43-0.46). Comparing multivariable regression with and without incorporation of household composition as a variable produced significant differences in odds of vaccination for health board, age group, and ethnic group categories. These results indicate that household composition is an important factor for the uptake of COVID-19 vaccination and consideration of differences in household composition is necessary to mitigate vaccination inequalities.

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.)

Objectives: Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation., Methods: Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised., Results: Searches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent's desired level of involvement., Conclusion: The highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making., Practice Implications: Complex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Introduction Patients are sensitive to both the frequency and costs of dental recall visits. Shared decision making (SDM) is a principle of patient-centred care, advocated by the National Institute for Health and Care Excellence and policymakers, whereby joint decisions are made between clinicians and patients.Aims To explore NHS dentists' and patients' attitudes towards SDM in decisions about recall interval.Methods Semi-structured telephone interviews were conducted with 25 NHS patients and 25 NHS general dental practitioners in Wales, UK. Transcripts were thematically analysed.Results While many patients would be happy to accept changes to their recall interval, most wanted to be seen at least annually. Most patients were willing to be guided by their dentist in decisions about recall interval, as long as consideration was given to issues such as time, travel and cost. This contrasted with the desire to actively participate in decisions about operative treatment. Although the dentists' understanding of SDM varied, practitioners considered it important to involve patients in decisions about their care. However, dentists perceived that time, patient anxiety and concerns about potential adverse outcomes were barriers to the use of SDM.Conclusions Since there is uncertainty about the most clinically effective and cost-effective dental recall strategy, patient preference may play a role in these decisions., (© 2022. The Author(s), under exclusive licence to the British Dental Association.)

Introduction The National Institute for Health and Care Excellence (NICE) Guideline CG19 recommends that the intervals between oral health reviews should be tailored to patients' disease risk. However, evidence suggests that most patients still attend at six-monthly intervals.Aim To explore facilitators and barriers to the implementation of CG19 in general dental practice.Methods Semi-structured telephone interviews were conducted with 25 NHS general dental practitioners (GDPs) in Wales, UK. Transcripts were thematically analysed.Results Dentists described integrating information on clinical risk, patients' social and dental history, and professional judgement when making decisions about recall interval. Although most GDPs reported routinely using risk-based recall intervals, a number of barriers exist to recall intervals at the extremes of the NICE recommendations. Many practitioners were unwilling to extend recall intervals to 24 months, even for the lowest-risk patients. Conversely, dentists described how it could be challenging to secure the agreement of high-risk patients to three-month recalls. In addition, time and workload pressures, the need to meet contractual obligations, pressure from contracting organisations and the fear of litigation also influenced the implementation of risk-based recalls.Conclusions Although awareness of the NICE Guideline CG19 was high, there is a need to explore how risk-based recalls may be best supported through contractual mechanisms., (© 2022. The Author(s).)

Public perceptions of pandemic viral threats and government policies can influence adherence to containment, delay, and mitigation policies such as physical distancing, hygienic practices, use of physical barriers, uptake of testing, contact tracing, and vaccination programs. The UK COVID-19 Public Experiences (COPE) study aims to identify determinants of health behaviour using the Capability, Opportunity, Motivation (COM-B) model using a longitudinal mixed-methods approach. Here, we provide a detailed description of the demographic and self-reported health characteristics of the COPE cohort at baseline assessment, an overview of data collected, and plans for follow-up of the cohort. The COPE baseline survey was completed by 11,113 UK adult residents (18+ years of age). Baseline data collection started on the 13th of March 2020 (10-days before the introduction of the first national COVID-19 lockdown in the UK) and finished on the 13th of April 2020. Participants were recruited via the HealthWise Wales (HWW) research registry and through social media snowballing and advertising (Facebook®, Twitter®, Instagram®). Participants were predominantly female (69%), over 50 years of age (68%), identified as white (98%), and were living with their partner (68%). A large proportion (67%) had a college/university level education, and half reported a pre-existing health condition (50%). Initial follow-up plans for the cohort included in-depth surveys at 3-months and 12-months after the first UK national lockdown to assess short and medium-term effects of the pandemic on health behaviour and subjective health and well-being. Additional consent will be sought from participants at follow-up for data linkage and surveys at 18 and 24-months after the initial UK national lockdown. A large non-random sample was recruited to the COPE cohort during the early stages of the COVID-19 pandemic, which will enable longitudinal analysis of the determinants of health behaviour and changes in subjective health and well-being over the course of the pandemic., Competing Interests: The authors have declared that no competing interests exist.

Background: Decades of effectiveness research has established the benefits of using patient decision aids (PtDAs), yet broad clinical implementation has not yet occurred. Evidence to date is mainly derived from highly controlled settings; if clinicians and health care organizations are expected to embed PtDAs as a means to support person-centered care, we need to better understand what this might look like outside of a research setting., Aim: This review was conducted in response to the IPDAS Collaboration's evidence update process, which informs their published standards for PtDA quality and effectiveness. The aim was to develop context-specific program theories that explain why and how PtDAs are successfully implemented in routine healthcare settings., Methods: Rapid realist review methodology was used to identify articles that could contribute to theory development. We engaged key experts and stakeholders to identify key sources; this was supplemented by electronic database (Medline and CINAHL), gray literature, and forward/backward search strategies. Initial theories were refined to develop realist context-mechanism-outcome configurations, and these were mapped to the Consolidated Framework for Implementation Research., Results: We developed 8 refined theories, using data from 23 implementation studies (29 articles), to describe the mechanisms by which PtDAs become successfully implemented into routine clinical settings. Recommended implementation strategies derived from the program theory include 1) co-production of PtDA content and processes (or local adaptation), 2) training the entire team, 3) preparing and prompting patients to engage, 4) senior-level buy-in, and 5) measuring to improve., Conclusions: We recommend key strategies that organizations and individuals intending to embed PtDAs routinely can use as a practical guide. Further work is needed to understand the importance of context in the success of different implementation studies.

Background: Lower urinary tract symptoms (LUTS) are common in males aged ≥40 years and have a considerable impact on quality of life. Management can be complex, and although most LUTS could be treated effectively in primary care, referrals to urology outpatients are increasing., Aim: To explore GPs' experiences of managing LUTS together with patients' experiences of and preferences for treatment in primary care., Design and Setting: Telephone interviews were conducted with GPs and male patients presenting to primary care with bothersome LUTS., Method: Eleven GPs and 25 male patients were purposively sampled from 20 GP practices in three UK regions: Newcastle upon Tyne, Bristol, and South Wales. Interviews were conducted between May 2018 and January 2019, and were analysed using a framework approach., Results: Difficulty establishing causes and differentiating between prostate and bladder symptoms were key challenges to the diagnosis of LUTS in primary care, often making treatment a process of trial and error. Pharmacological treatments were commonly ineffective and often caused side effects. Despite this, patients were generally satisfied with GP consultations and expressed a preference for treatment in primary care., Conclusion: Managing LUTS in primary care is a more accessible option for patients. Given the challenges of LUTS diagnosis, an effective diagnostic tool for use by GPs would be beneficial. Ensuring bothersome LUTS are not dismissed as a normal part of ageing is essential in improving patients' quality of life. Greater exploration of the role of non-pharmacological treatments is needed., (© The Authors.)

Background: Invasive urodynamics is used to investigate the causes of lower urinary tract symptoms; a procedure usually conducted in secondary care by specialist practitioners. No study has yet investigated the feasibility of carrying out this procedure in a non-specialist setting. Therefore, the aim of this study was to explore, using qualitative methodology, the feasibility and acceptability of conducting invasive urodynamic testing in primary care., Methods: Semi-structured interviews were conducted during the pilot phase of the PriMUS study, in which men experiencing bothersome lower urinary tract symptoms underwent invasive urodynamic testing along with a series of simple index tests in a primary care setting. Interviewees were 25 patients invited to take part in the PriMUS study and 18 healthcare professionals involved in study delivery. Interviews were audio-recorded, transcribed verbatim and analysed using a framework approach., Results: Patients generally found the urodynamic procedure acceptable and valued the primary care setting due to its increased accessibility and familiarity. Despite some logistical issues, facilitating invasive urodynamic testing in primary care was also a positive experience for urodynamic nurses. Initial issues with general practitioners receiving and utilising the results of urodynamic testing may have limited the potential benefit to some patients. Effective approaches to study recruitment included emphasising the benefits of the urodynamic test and maintaining contact with potential participants by telephone. Patients' relationship with their general practitioner was an important influence on study participation., Conclusions: Conducting invasive urodynamics in primary care is feasible and acceptable and has the potential to benefit patients. Facilitating study procedures in a familiar primary care setting can impact positively on research recruitment. However, it is vital that there is a support network for urodynamic nurses and expertise available to help interpret urodynamic results.

Background: Policy throughout the United Kingdom promotes involvement of patients and public members in research to benefit patient care and health outcomes. PRIME Centre Wales is a national research centre, developing and coordinating research about primary and emergency care which forms 90% of health service encounters. In this paper, we describe our approach to public involvement and engagement in PRIME Centre Wales (hereafter called PRIME), in particular: how this approach has developed; ways in which public members contribute to PRIME activity; the strengths and limitations of our approach, challenges and future opportunities. PRIME ensures work is relevant to service users, carers, the public and policy makers by incorporating comprehensive patient and public involvement in every phase of our work., Approach: PRIME has policies and processes to enable and promote successful public involvement and engagement across research activities. This ensures public perspectives and patient experiences are integrated throughout research development, implementation and dissemination and in managing and delivering PRIME strategy over a 10 year timescale. A public/patient group called SUPER is a key resource providing wide-ranging perspectives via email and face-to-face discussion. We collect information on processes and experiences to assess value and impact, to guide ongoing involvement and engagement. A funded post provides leadership and support to staff and to public/patient contributors to facilitate collaborations., Discussion: A stable, well-resourced structure has provided the timescales to build strong relationships and embed diverse approaches to public involvement and engagement within PRIME. Researchers and public contributors have committed to collaborations, developed knowledge and skills and sustained relationships. Effective approaches incorporate values and actions which, when operating together, strengthen processes and outcomes of public involvement and engagement., Conclusion: Supportive context, motivation and time are necessary to foster values and practices that enable effective public involvement and engagement. PRIME has embedded public involvement and engagement across research activities and structures. Central is the public/patient group SUPER offering experience-based expertise to add value to the research cycle. This innovative model, aligned with best practice, enhances relevance and quality of primary and emergency care research to benefit patients and the general population.

Introduction: Lower urinary tract symptoms (LUTS) is a bothersome condition affecting older men which can lead to poor quality of life. General practitioners (GPs) currently have no easily available assessment tools to help effectively diagnose causes of LUTS and aid discussion of treatment with patients. Men are frequently referred to urology specialists who often recommend treatments that could have been initiated in primary care. GP access to simple, accurate tests and clinician decision tools are needed to facilitate accurate and effective patient management of LUTS in primary care., Methods and Analysis: PRImary care Management of lower Urinary tract Symptoms (PriMUS) is a prospective diagnostic accuracy study based in primary care. The study will determine which of a number of index tests used in combination best predict three urodynamic observations in men who present to their GP with LUTS. These are detrusor overactivity, bladder outlet obstruction and/or detrusor underactivity. Two cohorts of participants, one for development of the prototype diagnostic tool and other for validation, will undergo a series of simple index tests and the invasive reference standard (invasive urodynamics). We will develop and validate three diagnostic prediction models based on each condition and then combine them with management recommendations to form a clinical decision support tool., Ethics and Dissemination: Ethics approval is from the Wales Research Ethics Committee 6. Findings will be disseminated through peer-reviewed journals and conferences, and results will be of interest to professional and patient stakeholders., Trial Registration Number: ISRCTN10327305., Competing Interests: Competing interests: One of the index tests, Flowtaker, was developed by a team from Newcastle upon Tyne Hospitals (NuTH) and Newcastle University, including two individuals who are grant co-applicants, members of the study management team and co-authors (AB and MiD). In 2014, the device was licensed to MMS (Enschede, the Netherlands) and royalties from the sale of the device were paid to NuTH (not to the individuals). MMS was subsequently acquired by Laborie who removed Flowtaker from the market in January 2018., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

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.)

Objective: Research is needed to understand how Shared Decision-Making (SDM) is enacted in routine clinical settings. We aimed to 1) describe the process of SDM between clinicians and patients; 2) examine how well the SDM process compares to a prescriptive model of SDM, and 3) propose a descriptive model based on observed SDM in routine practice., Methods: Patients with chronic kidney disease and early stage breast cancer were recruited consecutively via Cardiff and Vale University Health Board (UK) teams. Consultations were audio-recorded, transcribed and thematically analysed., Results: Seventy-six consultations were observed: 26 pre-dialysis consultations and two consultations each for 25 breast cancer patients. Key stages of the 'Three Talk Model' were observed. However, we also observed more elements and greater complexity: a distinct preparation phase; tailored and evolving integrative option conversation; patients and clinicians developing 'informed preferences'; distributed and multi-stage decisions; and a more open-ended planning discussion. Use of decision aids was limited., Conclusion: A more complex picture was observed compared with previous portrayals in current theoretical models., Practice Iimplications: The model can provide a basis for future training and initiatives to promote SDM, and tackle the gap between what is advocated in policy, but rarely achieved in practice., (Copyright © 2019 Elsevier B.V. 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.

Objectives: To examine how observer and self-report measures of shared decision-making (SDM) evaluate the decision-making activities that patients and clinicians undertake in routine consultations., Design: Multi-method study using observational and self-reported measures of SDM and qualitative analysis., Setting: Breast care and predialysis teams who had already implemented SDM., Participants: Breast care consultants, clinical nurse specialists and patients who were making decisions about treatment for early-stage breast cancer. Predialysis clinical nurse specialists and patients who needed to make dialysis treatment decisions., Methods: Consultations were audio recorded, transcribed and thematically analysed. SDM was measured using Observer OPTION-5 and a dyadic SureScore self-reported measure., Results: Twenty-two breast and 21 renal consultations were analysed. SureScore indicated that clinicians and patients felt SDM was occurring, but scores showed ceiling effects for most participants, making differentiation difficult. There was mismatch between SureScore and OPTION-5 score data, the latter showing that each consultation lacked at least some elements of SDM. Highest scoring items using OPTION-5 were 'incorporating patient preferences into decisions' for the breast team (mean 18.5, range 12.5-20, SD 2.39) and 'eliciting patient preferences to options' for the renal team (mean 16.15, range 10-20, SD 3.48). Thematic analysis identified that the SDM encounter is difficult to measure because decision-making is often distributed across encounters and time, with multiple people, it is contextually adapted and can involve multiple decisions., Conclusions: Self-reported measures can broadly indicate satisfaction with SDM, but do not tell us about the quality of the interaction and are unlikely to capture the multi-staged nature of the SDM process. Observational measures provide an indication of the extent to which elements of SDM are present in the observed consultation, but cannot explain why some elements might not be present or scored lower. Findings are important when considering measuring SDM in practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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.

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.)

Objective: Significant advances have been made in the development of decision support interventions, also called decision aids, for patients facing difficult or uncertain decisions. However, challenges related to the definition, the theoretical underpinnings, the relative contribution of different components and how to migrate these tools to the Internet, remain unresolved. We propose a systematic process map for others to consider as they develop web-based, perhaps multimedia, decision support interventions and to examine the future challenges faced by developers., Methods: Based on our experiences of developing and evaluating web-based decision support interventions, we outline a process map to illustrate the general principles of content specification followed by creative design and tailoring to the target audience., Results: Content specification is fundamental and it should go beyond the traditional emphasis on scientific evidence in order to ensure patients' perspectives on the proposed options. The creative design phase aims to develop a medium to achieve three fundamental tasks: present information; achieve accurate affective forecasting; provide a basis for preference construction. This phase should be an open to experimentation and, where empirical work may be difficult or not yet available, guided by consultation with users, using an iterative method of trial and adaptation., Conclusion: There is little empirical research on how best to achieve these tasks. The guiding principle needs to be one of customising the delivery, based on close consultation with the target users and an iterative development process until the intervention is deemed accessible and useful., Practice Implications: The process map provides a basis for further developments and outlines areas where remaining challenges need further investigation., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)