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People with kidney failure receiving dialysis or kidney transplantation find it difficult to adapt to treatment related routines and restrictions, and feel frustrated when their expectations aren't matched by their lived experience. Health professionals provide information to help people prepare for kidney treatments, but it may be that 'peer supporters' - people who live with kidney disease - can provide more easily understood and relevant information. This study will explore how learning from peer supporters might improve the experience of treatment, after dialysis initiation and post-transplantation, by helping them to better understand what to expect from treatments. Two mixed methods studies including in-depth interviews and questionnaires. In each study, participants will be recruited at two timepoints, before commencing dialysis or transplantation, and 6 months later. Questionnaires and interviews will explore expectations and the lived experience of treatment, and if peer support impacts on adjustment and coping with treatment. Participants will be recruited from two large teaching hospitals in the North and South of England, where one has access to a formal kidney peer support program. Delivering peer support in kidney units is increasingly popular, yet provision is inconsistent and generally low quality. Providing an evidence base for it's use will help guide the optimal development of peer support programmes and efficient allocation of peer resources. A report will be produced to summarise the our findings, which will help kidney units better help people with kidney failure prepare for kidney treatments.

Background MDT discussion is the gold standard for cancer care in the UK. With the incidence of cancer on the rise, demand for MDT discussion is increasing. The need for efficiency, whilst maintaining high standards, is therefore clear. Paper-based MDT quality assessment tools and discussion checklists may represent a practical method of monitoring and improving MDT practice. This reviews aims to describe and appraise these tools, as well as consider their value to quality improvement. Methods Medline, EMBASE and PsycInfo were searched using pre-defined terms. The PRISMA model was followed throughout. Studies were included if they described the development of a relevant tool, or if an element of the methodology further informed tool quality assessment. To investigate efficacy, studies using a tool as a method of quality improvement in MDT practice were also included. Study quality was appraised using the COSMIN risk of bias checklist or the Newcastle-Ottawa scale, depending on study type. Results The search returned 7930 results. 18 studies were included. In total 7 tools were identified. Overall, methodological quality in tool development was adequate to very good for assessed aspects of validity and reliability. Clinician feedback was positive. In one study, the introduction of a discussion checklist improved MDT ability to reach a decision from 82.2 to 92.7%. Improvement was also noted in the quality of information presented and the quality of teamwork. Conclusions Several tools for assessment and guidance of MDTs are available. Although limited, current evidence indicates sufficient rigour in their development and their potential for quality improvement. Trial registration PROSPERO ID: CRD42021234326 .

Pulmonary Rehabilitation (PR) services typically offer programmes to support individuals living with COPD make rehabilitation choices that best meet their needs, however, uptake remains low. Shared Decision-Making (SDM; e.g., Patient Decision Aids (PtDA)) interventions increase informed and values-based decision-making between individuals and healthcare professionals (HCPs). We aimed to develop an intervention to facilitate PR SDM which was acceptable to individuals living with COPD and PR HCPs. An iterative development process involving qualitative methods was adopted. Broad overarching frameworks included: complex intervention development framework, the multiple stakeholder decision making support model, and the Ottawa Decision Support Framework. Development included: assembling a steering group, outlining the scope for the PtDA, collating data to inform the PtDA design, prototype development, alpha testing with individuals with COPD (n = 4) and PR HCPs (n = 8), PtDA finalisation, and design and development of supporting components. This took nine months. The PtDA was revised six times before providing an acceptable, comprehensible, and usable format for all stakeholders. Supporting components (decision coaching training and a consultation prompt) were necessary to upskill PR HCPs in SDM and implement the intervention into the PR pathway. We have developed a three-component SDM intervention (a PtDA, decision coaching training for PR healthcare professionals, and a consultation prompt) to support individuals living with COPD make informed and values-based decision about PR together with their PR healthcare professional. Clear implementation strategies are outlined which should support its integration into the PR pathway.

ObjectiveShared decision-making (SDM) supports patients to make informed and value-based decisions about their care. We are developing an intervention to enable healthcare professionals to support patients’ pulmonary rehabilitation (PR) decision-making. To identify intervention components we needed to evaluate others carried out in chronic respiratory diseases (CRDs). We aimed to evaluate the impact of SDM interventions on patient decision-making (primary outcome) and downstream health-related outcomes (secondary outcome).DesignWe conducted a systematic review using the risk of bias (Cochrane ROB2, ROBINS-I) and certainty of evidence (Grading of Recommendations Assessment, Development and Evaluation) tools.Data sourcesMEDLINE, EMBASE, PSYCHINFO, CINAHL, PEDRO, Cochrane Central Register of Controlled Trials, the International Clinical Trials Registry Platform Search Portal, ClinicalTrials.gov, PROSPERO, ISRCTN were search through to 11th April 2023.Eligibility criteriaTrials evaluating SDM interventions in patients living with CRD using quantitative or mixed methods were included.Data extraction and synthesisTwo independent reviewers extracted data, assessed risk of bias and certainty of evidence. A narrative synthesis, with reference to The Making Informed Decisions Individually and Together (MIND-IT) model, was undertaken.ResultsEight studies (n=1596 (of 17 466 citations identified)) fulfilled the inclusion criteria.Five studies included components targeting the patient, healthcare professionals and consultation process (demonstrating adherence to the MIND-IT model). All studies reported their interventions improved patient decision-making and health-related outcomes. No outcome was reported consistently across studies. Four studies had high risk of bias, three had low quality of evidence. Intervention fidelity was reported in two studies.ConclusionsThese findings suggest developing an SDM intervention including a patient decision aid, healthcare professional training, and a consultation prompt could support patient PR decisions, and health-related outcomes. Using a complex intervention development and evaluation research framework will likely lead to more robust research, and a greater understanding of service needs when integrating the intervention within practice.PROSPERO registration numberCRD42020169897.

Background Person-centred medicine in older patients requires medication decisions to be aligned with individual preferences, needs, and values. However, involvement of care home residents and their relatives in such decisions remains limited due to professional preferences and perceived barriers. This study investigates the feasibility of a newly developed intervention aiming to facilitate person-centred medicine through resident and relative involvement and interprofessional communication support. Methods The feasibility testing was conducted in two care homes from April to October 2022 in an urban Danish Municipality. The intervention consisted of two components: the PREparation of Patients for Active Involvement in medication Review for Care Home (PREPAIR-CH) and a medication communication template for healthcare professionals. A flexible three-stage workflow and a multifaceted implementation strategy facilitated implementation. Data was collected through observations and interviews with healthcare professionals (care home staff, GPs), residents, and relatives. Data analysis was guided by Normalization Process Theory. Results Ten residents participated in the intervention (four in the presence of relatives) and were subsequently interviewed. Additionally, five interviews with healthcare professionals were conducted. The intervention purpose was deemed relevant by residents, relatives, and healthcare professionals and aligned with individual values. The implementation strategy followed the intended delivery. Flexibility, coordination, and collaboration within the local team were key to facilitating intervention implementation. Challenges included selection of residents, involvement of relatives, and management of competing priorities. The intervention offered a structure for involvement and provided valuable insights for healthcare professionals into the patient perspective, thereby fostering reflection and dialogue and enhancing the residents’ and relatives’ perceived involvement. The medication communication template was considered relevant by staff, whereas GPs found it unnecessary. Conclusions The PREPAIR-CH was found acceptable and feasible by residents, relatives, and healthcare professionals, but care home staff and GPs disagreed on the relevance of the medication communication template. The findings suggest that the intervention may enhance resident and relative involvement to support person-centred medicine. Some uncertainties must be explored before a large-scale evaluation, including the applicability to different types of residents and how to support interprofessional communication about medicines, as the needs appear to differ between care home staff and GPs.

Background Shared  decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices. It was developed in Canada with French and English versions, and recently translated into German. This study aims to adapt the IcanSDM measure for Danish-speaking healthcare professionals, and evaluate its psychometric properties. Methods Cultural adaptation and translation based on Beaton et al.'s approach was applied. A forward translation by ten people and a backward translation by two people were performed. To assess comprehensibility, cognitive interviews were conducted with 24 healthcare professionals. Eighty healthcare professionals who were trained in shared decision making for either one hour (n = 65) or one day (n = 15) participated in the psychometric evaluation. The evaluation concerned acceptance, item characteristics, skewness, item difficulties, corrected item-total correlations, inter-item correlations, factorial structure, internal consistency, and responsiveness. Results The forward and backward translation revealed few discrepancies, and participants understood the items well. The psychometric evaluation showed a high completion rate and acceptable item difficulties and discrimination values. Both the factor analysis and the internal consistency showed a 2-factor structure: 1) healthcare professionals' capacity to implement shared decision making; and 2) healthcare professionals' capacity to practise shared decision making. The IcanSDM_Danish obtained a Cronbach’s alpha coefficient of 0.74. The evaluation of responsiveness showed improvement, but was not statistically significant. Conclusion The IcanSDM_Danish has good cross-cultural validity and internal consistency, and a 2-factor structure. The IcanSDM_Danish is capable of providing reliable and valid measurement when evaluating constructed knowledge about shared decision making, and may be able to support the implementation of shared decision making training and evaluation of its impact.

ObjectiveTo explore patient and healthcare professional perceptions about the acceptability and impact of a large-scale system for automated, real-time monitoring and feedback of shared decision-making (SDM) that has been integrated into surgical care pathways.DesignQualitative, semistructured interviews were conducted with patients and healthcare professionals between June and November 2021. Data were analysed using deductive and inductive approaches.SettingLarge-scale monitoring of SDM has been integrated in NHS surgical care across two large UK National Health Service Trusts.ParticipantsAdult surgical patients (N=18, 56% female), following use of an SDM real-time monitoring and feedback system, and healthcare professionals (N=14, 36% female) involved in their surgical care. Patient recruitment was conducted through hospital research nurses and professionals by direct approach from the study team to sample individuals purposively from seven surgical specialties (general, vascular, urology, orthopaedics, breast, gynaecology and urgent cardiac).Results10 themes were identified within three areas of exploration that described factors underpinning: (1) the acceptability of large-scale automated, real-time monitoring of SDM experiences, (2) the acceptability of real-time feedback and addressing SDM deficiencies and (3) the impact of real-time monitoring and feedback. There was general support for real-time monitoring and feedback because of its perceived ability to efficiently address deficiencies in surgical patients’ SDM experience at scale, and its perceived benefits to patients, surgeons and the wider organisation. Factors potentially influencing acceptability of large-scale automated, real-time monitoring and feedback were identified for both stakeholder groups, for example, influence of survey timing on patient-reported SDM scores, disease-specific risks, patients’ dissatisfaction with hospital processes. Factors particularly important for patients included concerns over digital exclusion exacerbated by electronic real-time monitoring. Factors unique to professionals included the need for detailed, qualitative feedback of SDM to contextualise patient-reported SDM scores.ConclusionsThis study explored factors influencing the acceptability of automated, real-time monitoring and feedback of patients’ experiences of SDM integrated into surgical practice, at scale among key stakeholders. Findings will be used to guide refinement and implementation of SDM monitoring and feedback prior to formal development, evaluation and implementation of an SDM intervention in the NHS.Trial registration numberISRCTN17951423.The original protocoldoi: 10.1136/bmjopen-2023-079155.

IntroductionHigh-quality shared decision-making (SDM) is a priority of health services, but only achieved in a minority of surgical consultations. Improving SDM for surgical patients may lead to more effective care and moderate the impact of treatment consequences. There is a need to establish effective ways to achieve sustained and large-scale improvements in SDM for all patients whatever their background. The ALPACA Study aims to develop, pilot and evaluate a decision support intervention that uses real-time feedback of patients’ experience of SDM to change patients’ and healthcare professionals’ decision-making processes before adult elective surgery and to improve patient and health service outcomes.Methods and analysisThis protocol outlines a mixed-methods study, involving diverse stakeholders (adult patients, healthcare professionals, members of the community) and three National Health Service (NHS) trusts in England. Detailed methods for the assessment of the feasibility, usability and stakeholder views of implementing a novel system to monitor the SDM process for surgery automatically and in real time are described. The study will measure the SDM process using validated instruments (CollaboRATE, SDM-Q-9, SHARED-Q10) and will conduct semi-structured interviews and focus groups to examine (1) the feasibility of automated data collection, (2) the usability of the novel system and (3) the views of diverse stakeholders to inform the use of the system to improve SDM. Future phases of this work will complete the development and evaluation of the intervention.Ethics and disseminationEthical approval was granted by the NHS Health Research Authority North West-Liverpool Central Research Ethics Committee (reference: 21/PR/0345). Approval was also granted by North Bristol NHS Trust to undertake quality improvement work (reference: Q80008) overseen by the Consent and SDM Programme Board and reporting to an Executive Assurance Committee.Trial registration numberISRCTN17951423; Pre-results.

All people with motor neuron disease (pwMND) in England are eligible for genome sequencing (GS), with panel-based testing. With the advent of genetically targeted MND treatments, and increasing demand for GS, it is important that clinicians have the knowledge and skills to support pwMND in making informed decisions around GS. We undertook an online survey of clinical genomic knowledge and genetic counselling skills in English clinicians who see pwMND. There were 245 respondents to the survey (160 neurology clinicians and 85 genetic clinicians). Neurology clinicians reported multiple, overlapping barriers to offering pwMND GS. Lack of time to discuss GS in clinic and lack of training in genetics were reported. Neurology clinicians scored significantly less well on self-rated genomic knowledge and genetic counselling skills than genetic clinicians. The majority of neurology clinicians reported that they do not have adequate educational or patient information resources to support GS discussions. We identify low levels of genomic knowledge and skills in the neurology workforce. This may impede access to GS and precision medicine for pwMND.

Improving shared decision-making (SDM) for patients has become a health policy priority in many countries. Achieving high-quality SDM is particularly important for approximately 313 million surgical treatment decisions patients make globally every year. Large-scale monitoring of surgical patients' experience of SDM in real time is needed to identify the failings of SDM before surgery is performed. We developed a novel approach to automating real-time data collection using an electronic measurement system to address this. Examining usability will facilitate its optimization and wider implementation to inform interventions aimed at improving SDM. This study examined the usability of an electronic real-time measurement system to monitor surgical patients' experience of SDM. We aimed to evaluate the metrics and indicators relevant to system effectiveness, system efficiency, and user satisfaction. We performed a mixed methods usability evaluation using multiple participant cohorts. The measurement system was implemented in a large UK hospital to measure patients' experience of SDM electronically before surgery using 2 validated measures (CollaboRATE and SDM-Q-9). Quantitative data (collected between April 1 and December 31, 2021) provided measurement system metrics to assess system effectiveness and efficiency. We included adult patients booked for urgent and elective surgery across 7 specialties and excluded patients without the capacity to consent for medical procedures, those without access to an internet-enabled device, and those undergoing emergency or endoscopic procedures. Additional groups of service users (group 1: public members who had not engaged with the system; group 2: a subset of patients who completed the measurement system) completed user-testing sessions and semistructured interviews to assess system effectiveness and user satisfaction. We conducted quantitative data analysis using descriptive statistics and calculated the task completion rate and survey response rate (system effectiveness) as well as the task completion time, task efficiency, and relative efficiency (system efficiency). Qualitative thematic analysis identified indicators of and barriers to good usability (user satisfaction). A total of 2254 completed surveys were returned to the measurement system. A total of 25 service users (group 1: n=9; group 2: n=16) participated in user-testing sessions and interviews. The task completion rate was high (169/171, 98.8%) and the survey response rate was good (2254/5794, 38.9%). The median task completion time was 3 (IQR 2-13) minutes, suggesting good system efficiency and effectiveness. The qualitative findings emphasized good user satisfaction. The identified themes suggested that the measurement system is acceptable, easy to use, and easy to access. Service users identified potential barriers and solutions to acceptability and ease of access. A mixed methods evaluation of an electronic measurement system for automated, real-time monitoring of patients' experience of SDM showed that usability among patients was high. Future pilot work will optimize the system for wider implementation to ultimately inform intervention development to improve SDM. RR2-10.1136/bmjopen-2023-079155.