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Purpose: Brachial plexus birth injuries (BPBI) can have lifelong effects on the development and functional use of the upper extremity. Currently there is no agreement with regards to what patient-reported outcome (PRO) measures should be used. Therefore, the ability to compare the effects of treatment between individuals and institutions is challenging. This study aimed to achieve consensus among clinicians on the use of PRO measures within this patient group to allow for improved comparison of treatments and outcomes in the future. Materials and Methods: Online, a 3 round Delphi survey was completed by 35 international multi-disciplinary specialist centers. Results: All respondents (100%) agreed that PRO measures are useful for clinical evaluation and patient treatment. None of the outcome measures scored >75% agreement for ability to assess responsiveness and current state in children with BPBI as most outcome measures were judged as not specific for BPBI. Additionally, participant centers were asked their perspective on the best available PRO option for each of the 3 categories: functional use of the upper limb, quality of life and pain. This resulted in endorsement by the participant centers of the Brachial Plexus Outcome Measure – Self-Evaluation, the Pediatric Quality of Life Inventory, and Visual Analogue Scale/Brief Pain Inventory respectively. Conclusion: International specialists in BPBI agree that PRO measures are important to use both clinically and in research in children aged 5 years and above. IMPLICATIONS FOR REHABILITATION: Patient-reported outcome measures were judged as useful both in clinic and in research for brachial plexus birth injury (BPBI), according to a panel of specialized centers. Currently available outcome measures were judged as not specific for BPBI. The panel endorsed the following measures as best available: the Brachial Plexus Outcome Measure – Self-Evaluation scale for functional evaluation, the Pediatric Quality of Life Inventory for disease-related quality of life and the Faces Pain Scale - Revised/Visual Analogue Scale/Brief Pain Inventory for pain [ABSTRACT FROM AUTHOR]

While explicit conceptual models help to inform research, they are left out of much of the health professions education (HPE) literature. One reason may be the limited understanding about how to develop conceptual models with intention and rigor. Group concept mapping (GCM) is a mixed methods conceptualization approach that has been used to develop frameworks for planning and evaluation, but GCM has not been common in HPE. The purpose of this article is to describe GCM in order to make it more accessible for HPE scholars. We recount the origins and evolution of GCM and summarize its core features: GCM can combine multiple stakeholder perspectives in a systematic and inclusive manner to generate explicit conceptual models. Based on the literature and prior experience using GCM, we detail seven steps in GCM: (1) brainstorming ideas to a specific "focus prompt," (2) preparing ideas by removing duplicates and editing for consistency, (3) sorting ideas according to conceptual similarity, (4) generating the point map through quantitative analysis, (5) interpreting cluster map options, (6) summarizing the final concept map, and (7) reporting and using the map. We provide illustrative examples from HPE studies and compare GCM to other conceptualization methods. GCM has great potential to add to the myriad of methodologies open to HPE researchers. Its alignment with principles of diversity and inclusivity, as well as the need to be systematic in applying theoretical and conceptual frameworks to practice, make it a method well suited for the complexities of contemporary HPE scholarship. [ABSTRACT FROM AUTHOR]

Background: Priority setting in mental health research is arguably lost in translation. Decades of effort has led to persistent repetition in what the research priorities of people with lived-experience of mental ill-health are. Aim: This was a narrative review and synthesis of published literature reporting mental health research priorities (2011-2023). Methods: A narrative framework was established with the questions: (1) who has been involved in priority setting? With whom have priorities been set? Which priorities have been established and for whom? What progress has been made? And, whose priorities are being progressed? Results: Seven papers were identified. Two were Australian, one Welsh, one English, one was from Chile and another Brazilian and one reported on a European exercise across 28 countries (ROAMER). Hundreds of priorities were listed in all exercises. Prioritisation mostly occured from survey rankings and/or workshops (using dots, or post-it note voting). Most were dominated by clinicians, academics and government rather than people with lived-experience of mental ill-health and carer, family and kinship group members. Conclusion: One lived-experience research led survey was identified. Few studies reported lived-experience design and development involvement. Five of the seven papers reported responses, but no further progress on priorities being met was reported. PRISMA/PROSPERO STATEMENT: This review followed PRISMA guidance for search strategy development and systematic review and reporting. This was not a systematic review with or without meta-analysis and the method did not fit for registration with PROSPERO. [ABSTRACT FROM AUTHOR]

Abstract Background A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. Method Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. Results A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. Conclusion The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.

Background Despite the significant role of consensus and dissensus in knowledge production, formal approaches to consensus are notably less common in the humanities compared to their frequent application in natural, social, and life sciences. This article therefore explores the potential of expert consensus methods in humanities-related research. Methods In order to do so, an interdisciplinary team of both sciences researchers experienced in consensus methods and researchers familiar with the domain of the humanities and epistemology, conducted a literary review and exchanged their expertise in multiple brainstorm sessions. Results This resulted in the identification of six key elements of expert consensus methods. It also provided for an overview of different types of expert consensus methods that regularly used in the natural, social, and life sciences: Delphi studies, nominal groups, consensus conferences, and Glaser’s state of the art method and illustrative examples from both sciences and humanities-related studies. An overview of possible purposes for applying these methods is provided to identify the research contexts in which these methods have proven their value, which can be extrapolated to humanities related issues for which these methods seem promising. Conclusions The comparisons and categorisation show that, when focusing on the purposes, there seem to be humanities-related issues that may lend themselves better to structured expert consensus methods than their subject matter and research methods might suggest. When deliberately applied in context chosen by researchers with expertise in a specific humanities domain, expert consensus methods can accelerate epistemic process, enhance transparency, increase replicability, stimulate diversity, and encourage fair processes in humanities research and the application of its findings.

Background: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. Method: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. Results: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. Conclusion: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised. [ABSTRACT FROM AUTHOR]

Clinically integrated teaching (CIT) is an effective approach for promoting evidence-based practice (EBP) competencies among medical students. Challenges towards the implementation of CIT in rehabilitation curricula include educators' different conceptualizations of EBP, the perceived complexity of EBP and the boundaries between the academic and the clinical setting. This study aimed to identify tailored strategies to implement in rehabilitation programs and their affiliated clinical sites to support the development of EBP competencies among students in occupational therapy (OT), physical therapy (PT) and speech-language pathology (S-LP). Nominal group technique (NGT) with stakeholders from three rehabilitation programs in Canada, offering the professional master's in OT and PT (n = 35 participants) and in S-LP (n = 8). The top two strategies identified in the OT/PT NGT were: 1) Developing a flexible definition of EBP that recognizes its complexity; 2) Providing clinicians with more access to the teaching content by pairing faculty with preceptors. The top two strategies identified in the S-LP NGT were: 1) Providing students with opportunities for decision-making with experienced clinicians; 2) Increasing interactions between faculty and preceptors using formal group meetings. Findings laid foundations for future integrated knowledge translation projects to collaboratively implement, and test identified strategies. Rehabilitation professions including occupational therapy, physical therapy and speech-language pathology acknowledge the importance of evidence-based practice (EBP). Current challenges in the teaching of EBP among rehabilitation students include educators' different conceptualizations of EBP, the perceived complexity of EBP, and the boundaries between the academic and the clinical setting. This study shows that increasing interactions between faculty and preceptors, for instance through an online community of practice, constitutes a stakeholder-endorsed priority to advance EBP education in rehabilitation. [ABSTRACT FROM AUTHOR]

Background Expert consensus methods are regularly used in natural, social, and life sciences. This article explores the potential of applying these methods more frequently in humanities research. Methods The authors reviewed literature and applied the philosophical methods of conceptual analysis and conceptual engineering. Results This article identifies and describes six main elements of expert consensus methods. It also provides an overview of the different types of expert consensus methods regularly used in the natural, social, and life sciences: Delphi studies, nominal groups, consensus conferences, and Glaser’s state of the art method. Subsequently, each of these types is illustrated by an example from the sciences. The article also presents the potential of and objections to the application of expert consensus methods there. It gives four examples of expert consensus methods that were applied in humanities research, also presented in line with the six elements. Conclusions The comparisons and categorization show that, as in the natural, social, and life sciences, expert consensus methods in the humanities can in some instances potentially accelerate the epistemic process and enhance transparency, replicability, diversity, and fair processes. Nevertheless, expert consensus methods need to be fine-tuned to do justice to the unique nature and approaches of the humanities and therefore further research is needed.

Background: Low back pain (LBP) is a common condition causing disability and high healthcare costs. Alberta faces challenges with unnecessary referrals to specialists and long wait times. A province‐wide standardized clinical care pathway based on evidence‐based best practices can improve efficiency, reduce wait times, and enhance patient outcomes. Implementing such pathways has shown success in other areas of healthcare in Alberta. This study developed a clinical decision‐making pathway to standardize care and minimize uncertainty in assessment, diagnosis, and management. Methods: A systematic rapid review identified existing tools and evidence that could support a comprehensive LBP clinical decision‐making tool. Forty‐seven healthcare professionals participated in four rounds of a modified Delphi approach to reach consensus on the assessment, diagnosis, and management of patients presenting to primary care with LBP in Alberta, Canada. This project was a collaborative effort between Alberta Health Services' Bone and Joint Health Strategic Clinical Network (BJHSCN) and the Alberta Bone and Joint Health Institute (ABJHI). Results: A province‐wide expert panel consisting of professionals from different health disciplines and regions collaborated to develop an LBP clinical decision‐making tool. This tool presents clinical care pathways for acute, subacute, and chronic LBP. It also provides guidance for history‐taking, physical examination, patient education, and management. Conclusions: This clinical decision‐making tool will help to standardize care, provide guidance on the diagnosis and management of LBP, and assist in clinical decision‐making for primary care providers in both public and private sectors. [ABSTRACT FROM AUTHOR]

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users. [ABSTRACT FROM AUTHOR]

There is increasing recognition of the need for researchers to collect and report data that can illuminate health inequities. In pain research, routinely collecting equity-relevant data has the potential to inform about the generalisability of findings; whether the intervention has differential effects across strata of society; or it could be used to guide population targeting for clinical studies. Developing clarity and consensus on what data should be collected and how to collect it is required to prompt researchers to further consider equity issues in the planning, conduct, interpretation, and reporting of research. The overarching aim of the ‘Identifying Social Factors that Stratify Health Opportunities and Outcomes’ (ISSHOOs) in pain research project is to provide researchers in the pain field with recommendations to guide the routine collection of equity-relevant data. The design of this project is consistent with the methods outlined in the ‘Guidance for Developers of Health Research Reporting Guidelines’ and involves 4 stages: (i) Scoping review; (ii) Delphi Study; (iii) Consensus Meeting; and (iv) Focus Groups. This stakeholder-engaged project will produce a minimum dataset that has global, expert consensus. Results will be disseminated along with explanation and elaboration as a crucial step towards facilitating future action to address avoidable disparities in pain outcomes.

Abstract Background There is inconsistency in outcomes collected in renal cell cancer (RCC) intervention effectiveness studies and variability in their definitions. This makes critical summaries of the evidence base difficult and sub‐optimally informative for clinical practice guidelines and decision‐making by patients and healthcare professionals. A solution is to develop a core outcome set (COS), an agreed minimum set of outcomes to be reported in all trials in a clinical area. Objectives To develop three COS for (a) localised, (b) locally advanced and (c) metastatic RCC study design, participants and methods The methods are the same for each of our three COS and are structured in two phases. Phase 1 identifies potentially relevant outcomes by conducting both a systematic literature review and patient interviews (N ~ 30 patients). Qualitative data will be analysed using framework analysis. In phase 2, all outcomes identified in phase 1 will be entered in a modified eDelphi, whereby patients and healthcare professionals (50 of each) will score each outcome's importance (Likert scale from 1 [not important] to 9 [critically important]). Outcomes scored in the 7–9 range by ≥70% and 1–3 by ≤15% will be regarded as ‘consensus in’, and the vice versa of this will constitute ‘consensus out’. All other combinations will be regarded as equivocal and discussed at consensus meetings (including 10 patients and 10 healthcare professionals) in order to vote on them and ratify the results of the eDelphi. Discussion The R‐COS will reduce outcome reporting heterogeneity and improve the evidence base for RCC. Study registration The study is registered with the COMET initiative: https://www.comet-initiative.org/studies/details/1406.

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.

Sustainability implementation efforts, relevant to all Sustainable Development Goals (SDG), can succeed or fail based on how the program activities effectively align with local community norms. Conflict arises when implementers incorrectly assume the ways in which local communities and other stakeholders share their world views. A novel approach was applied to identify conflicts between stakeholder norms through the example of wildlife conservation. This case is based on 62 systematically collected interviews involving law enforcement staff (wildlife police officers [WPOs]) and local community members in four of Zambia's Game Management Areas. Cultural consensus analysis (CCA) was used to extract and compare cultural models across groups. Discordant cultural norms were identified for resource protection, which reflected frailty of collaborative strategies. Concordant norms were relevant to shared understandings of the disproportionate burdens to GMA-based communities from conservation and some potential benefits of collaboration. This case shows exemplar application of CCA to capture and compare stakeholder norms associated with livelihoods and conservation, allowing better program design that reduces conflict and builds on shared values to better support SDGs, especially SDG15 (Life on Land).

Abstract Objective This study aimed to develop a measure of contributory factors to safety incidents in care homes to be completed by residents and/or their unpaid carers. Introduction Care home residents are particularly vulnerable to patient safety incidents, due to higher likelihood of frailty, multimorbidity and cognitive decline. However, despite residents and their carers wanting to be involved in safety initiatives, there are few mechanisms for them to contribute and make meaningful safety improvements to practice. Methods We developed 73 evidence‐based items from synthesis and existing measures, which we presented to a panel of stakeholders (residents/carers, health/social care professionals and researchers). We used two online rounds of Delphi to generate consensus (80%) on items important to include in the Resident Measure of Safety in Care Homes (RMOS); a consensus meeting was later held. The draft RMOS developed through the Delphi was presented to participants during ‘Think Aloud' interviews using cognitive testing techniques. Results The 29‐item RMOS was developed. Forty‐three participants completed Delphi round 1, and 27 participants completed round 2, 11 participants attended the consensus meeting and 12 ‘Think Aloud’ interviews were conducted. Of the 73 original items, 42 items that did not meet consensus in Delphi round 1 were presented in round 2. After the consensus meeting, it was agreed that 35 items would comprise the RMOS questionnaire and were presented in the ‘Think Aloud’ interviews. Participants suggested numerous changes to items mostly to improve comprehension and ability to answer. Conclusion We have a developed an evidence‐based RMOS, with good face validity, to assess contributory factors to safety in care homes from a resident/carer perspective. Future work will involve psychometrically testing the items in a pilot and developing a complementary simplified, dementia‐friendly version to promote inclusivity. Patient or Public Involvement Four patient and public contributors worked with researchers to develop the online questionnaires. Patients (residents) and carers participated on the consensus panel. One member of the research team is an expert by lived experience and was involved in design and analysis decisions. The item list and instructions for the questionnaires were reviewed for face validity, understanding and acceptability by a patient and public involvement group and modified.

Developing ambulatory health services (AHS) of optimal quality is a pending issue for many health systems at a global level, especially in middle- and low-income countries. An effective health response requires indicators to measure the quality of care that are context-specific and feasible for routine monitoring. This paper aimed to design and validate indicators for assessing the technical and interpersonal quality dimensions for type 2 diabetes (T2D) and acute respiratory infections (ARI) care in AHS. The study was conducted in two stages. First, technical and user-centered-based indicators of quality of care for T2D and ARI care were designed following international recommendations, mainly from the American Diabetes Association standards and the National Institute for Health and Care Excellence guidelines. We then assessed the validity, reliability, relevance, and feasibility of the proposed indicators implementing the modified Delphi technique. A panel of 17 medical experts from five countries scored the indicators using two electronic questionnaires, one for each reason for consultation selected, sent by email in two sequential rounds of rating. We defined the levels of consensus according to the overall median for each performance category, which was established as the threshold. Selected indicators included those with scores equal to or higher than the threshold. We designed 36 T2D indicators, of which 16 were validated for measuring the detection of risks and complications, glycemic control, pharmacological treatment, and patient-centered care. Out of the 22 indicators designed for ARI, we validated 10 for diagnosis, appropriate prescription of antimicrobials, and patient-centered care. The validated indicators showed consistency for the dimensions analyzed. Hence, they proved to be a potentially reliable and valuable tool for monitoring the performance of the various T2D and ARI care processes in AHS. Further research will be needed to verify the applicability of the validated indicators in routine clinical practice. [ABSTRACT FROM AUTHOR]

Abstract Aim The aim of the study was to reach consensus on modifiable risk factors for a novel system of care to address Manifestations of Frailty in hospitalized older adults. Design Consensus study. Method A modified nominal group technique, incorporating expert group face‐to‐face interaction, review of existing evidence and pre/post‐meeting questionnaire completion was undertaken November 2019–February 2020. Results Seventy‐one risk factors, within seven risk factor domains (pain, medication, fluid and nutrition intake, mobility, elimination, infection, additional patient factors) were considered. It was agreed that 44 risk factors incorporating patient, organizational and environmental risk factors were modifiable and should be included in a novel system of care.

Objective: This study aimed to develop a measure of contributory factors to safety incidents in care homes to be completed by residents and/or their unpaid carers. Introduction: Care home residents are particularly vulnerable to patient safety incidents, due to higher likelihood of frailty, multimorbidity and cognitive decline. However, despite residents and their carers wanting to be involved in safety initiatives, there are few mechanisms for them to contribute and make meaningful safety improvements to practice. Methods: We developed 73 evidence‐based items from synthesis and existing measures, which we presented to a panel of stakeholders (residents/carers, health/social care professionals and researchers). We used two online rounds of Delphi to generate consensus (80%) on items important to include in the Resident Measure of Safety in Care Homes (RMOS); a consensus meeting was later held. The draft RMOS developed through the Delphi was presented to participants during 'Think Aloud' interviews using cognitive testing techniques. Results: The 29‐item RMOS was developed. Forty‐three participants completed Delphi round 1, and 27 participants completed round 2, 11 participants attended the consensus meeting and 12 'Think Aloud' interviews were conducted. Of the 73 original items, 42 items that did not meet consensus in Delphi round 1 were presented in round 2. After the consensus meeting, it was agreed that 35 items would comprise the RMOS questionnaire and were presented in the 'Think Aloud' interviews. Participants suggested numerous changes to items mostly to improve comprehension and ability to answer. Conclusion: We have a developed an evidence‐based RMOS, with good face validity, to assess contributory factors to safety in care homes from a resident/carer perspective. Future work will involve psychometrically testing the items in a pilot and developing a complementary simplified, dementia‐friendly version to promote inclusivity. Patient or Public Involvement: Four patient and public contributors worked with researchers to develop the online questionnaires. Patients (residents) and carers participated on the consensus panel. One member of the research team is an expert by lived experience and was involved in design and analysis decisions. The item list and instructions for the questionnaires were reviewed for face validity, understanding and acceptability by a patient and public involvement group and modified. [ABSTRACT FROM AUTHOR]

To address methodological deficiencies in published randomized controlled trials and systematic reviews, this study has developed a core outcome set to guide future research in ectopic pregnancy (EP). To identify potential outcomes, we performed a comprehensive literature review and interviews with individuals with lived experience in EP. Potential core outcomes were then entered into a 3-round Delphi survey. A total of 154 participants from 6 continents, comprising health care professionals, researchers, and individuals with lived experience in EP, completed all 3 rounds of the Delphi survey. Outcomes were prioritized at 3 consensus development meetings, and recommendations were developed on how to report these outcomes where possible. Not applicable. Health care professionals, researchers, and individuals with lived experience in EP. Not applicable. Consensus for inclusion in core outcome set. Six outcomes reached full consensus, including treatment success, resolution time, the number of additional interventions, adverse events, mortality and severe morbidity, and treatment satisfaction. The core outcome set with 6 outcomes for EP will help standardize reporting of clinical trials, facilitate implementation of findings into clinical practice, and enhance patient-centered care. [ABSTRACT FROM AUTHOR]

Abstract Background Single-sided deafness (SSD) has functional, psychological, and social consequences. Interventions for adults with SSD include hearing aids and auditory implants. Benefits and harms (outcome domains) of these interventions are until now reported inconsistently in clinical trials. Inconsistency in reporting outcome measures prevents meaningful comparisons or syntheses of trial results. The Core Rehabilitation Outcome Set for Single-Sided Deafness (CROSSSD) international initiative used structured communication techniques to achieve consensus among healthcare users and professionals working in the field of SSD. The novel contribution is a set of core outcome domains that experts agree are critically important to assess in all clinical trials of SSD interventions. Methods A long list of candidate outcome domains compiled from a systematic review and published qualitative data, informed the content of a two-round online Delphi survey. Overall, 308 participants from 29 countries were enrolled. Of those, 233 participants completed both rounds of the survey and scored each outcome domain on a 9-point scale. The set of core outcome domains was finalised via a web-based consensus meeting with 12 participants. Votes involved all stakeholder groups, with an approximate 2:1 ratio of professionals to healthcare users participating in the Delphi survey, and a 1:1 ratio participating in the consensus meeting. Results The first round of the survey listed 44 potential outcome domains, organised thematically. A further five outcome domains were included in Round 2 based on participant feedback. The structured voting at round 2 identified 17 candidate outcome domains which were voted on at the consensus meeting. Consensus was reached for a core outcome domain set including three outcome domains: spatial orientation, group conversations in noisy social situations, and impact on social situations. Seventy-seven percent of the remaining Delphi participants agreed with this core outcome domain set. Conclusions Adoption of the internationally agreed core outcome domain set would promote consistent assessment and reporting of outcomes that are meaningful and important to all relevant stakeholders. This consistency will in turn enable comparison of outcomes reported across clinical trials comparing SSD interventions in adults and reduce research waste. Further research will determine how those outcome domains should best be measured.

Background/purpose: The implementation of competency-based medical education is a social construction process within a local and cultural context. However, little is known about the process of adaptation to different systems, known as “glocalization”. We analyzed the documents in the development of a milestone project from adapting global standards into a local context and identified a framework underlying this process. Methods: Taiwan Society of Emergency Medicine (TSEM) had developed learning milestones based on the ACGME's version through series of consensus methods including committee work, nominal group technique (NGT), and a modified Delphi method. We applied qualitative content analysis to characterize the evolution of the three versions of TSEM and the original ACGME milestones documents and to explore the meaning behind the differences revealed by the glocalization process. Results: We found 48 differences between ACGME and TSEM milestones. Among these differences, one was made by committee work, 44 came from NGT, and 3 were from the modified Delphi process. Two themes and seven sub-themes emerged from the coding process to explain the contextualization process of the milestones. Conclusion: We identified a framework that incorporates local expression and local needs into the process called glocalization through which global models of competency-based standards could be optimally implemented in a local context with different systems and cultures.

Abstract Background The number and efficacy of indicators used to monitor and improve the quality of care in Intensive Care Units (ICU) is debatable. This study aimed to select a consensus-based core set of indicators for effective quality improvement in the ICU. Methods A Delphi study with a panel of intensivists, ICU nurses, and former ICU patients or relatives (n = 34) from general, teaching, and academic hospitals. Panelists completed a questionnaire in which they scored 69 preselected quality indicators on relevance using a nine-point Likert scale. Indicators were categorized using the rated relevance score into: ‘accepted, ‘equivocal’ and ‘excluded’. Questionnaire results were discussed in focus groups to reach consensus on the final set. Results Response rates for the questionnaire and focus groups were 100 and 68%, respectively. Consensus was reached on a final set of 17 quality indicators including patient reported outcome measures (PROMs) and patient reported experience measures (PREMs). Other quality indicators relate to the organization and outcome of ICU care, including safety culture, ICU standardized mortality ratio, and the process indicator ‘learning from and improving after serious incidents’. Conclusions ICU clinicians and former patients and relatives developed a consensus-based core set of ICU quality indicators that is relatively short but comprehensive and particularly tailored to end-users needs.

Phylogenetic analysis frequently leads to the creation of many phylogenetic trees, either from using multiple genes or methods, or through bootstrapping or Bayesian analysis. A consensus tree is often used to summarize what the trees have in common. Consensus networks were introduced to also allow the visualization of the main incompatibilities among the trees. However, in practice, such networks often contain a large number of nodes and edges, and can be non-planar, making them difficult to interpret. Here, we introduce the new concept of a phylogenetic consensus outline, which provides a planar visualization of incompatibilities in the input trees, without the complexities of a consensus network. Furthermore, we present an effective algorithm for its computation. We demonstrate its usage and explore how it compares to other methods on a Bayesian phylogenetic analysis of languages using data from a published database and on multiple gene trees from a published study on water lilies.

Background: Chronic musculoskeletal pain (CMSP) is prevalent globally and places a significant burden on individuals, healthcare systems and economies. Contextually appropriate clinical practice guidelines (CPGs) on CMSP are advocated to translate evidence into practice. Aim: This study aimed to investigate the applicability and feasibility of evidence-based CPG recommendations for adults with CMSP in the primary health care (PHC) sector of South Africa (SA). Setting: The PHC sector in South Africa (SA). Methods: Consensus methodology was used, comprising two online Delphi rounds and a consensus meeting. A multidisciplinary panel of local healthcare professionals involved in CMSP management was purposefully sampled and invited to participate. The first Delphi survey considered 43 recommendations. In the consensus meeting, the results of the first Delphi round were discussed. The second Delphi round reconsidered the recommendations with no consensus. Results: Seventeen experts participated in the first Delphi round, 13 in the consensus meeting and 14 in the second Delphi round. In Delphi round two, 40 recommendations were endorsed, three were not endorsed and an additional recommendation was added. Conclusion: A multidisciplinary panel endorsed 41 multimodal clinical recommendations as applicable and feasible for the PHC of adults with CMSP, in SA. Although certain recommendations were endorsed, they may not be readily implementable in SA because of context factors. Contribution: The study forms the basis of a model of care for contextually relevant PHC of CMSP. Future research should explore factors that could influence the uptake of the recommendations into practice to optimise chronic pain care in SA.

Background: The introduction of clinical pharmacy services is part of a multi-disciplinary approach to reduce pressure on primary care. Ascertaining the impact of clinical pharmacists in general practice is vital to ensure intended benefits are achieved. However, this is complicated by poor quality evidence, multiple interventions, and a lack of agreement regarding outcome measures.Objectives: To develop an outcomes framework for clinical pharmacy services delivered in Scottish general practice using a consensus methodology.Methods: A modified nominal group technique (NGT) was conducted using Microsoft Teams and Qualtrics. This involved a pre-NGT questionnaire, silent generation of ideas, round robin, discussions, ranking, and a final consensus exercise. A selective sampling strategy recruited experienced pharmacists from Scottish health regions. NGT ranking results were used to signify relative importance of the outcome areas. NGT discussions underwent inductive thematic analysis to explore key areas considered.Result: Overall, 13 (median: 24 years of experience) pharmacists participated, representing 11 of 14 Scottish regions. In total, 21 outcome areas, derived from the literature and a pre-NGT questionnaire, were considered during the NGT ranking exercise. Consensus identified five important outcome areas: Patient Experience, Medication Related Adverse Events, Cost-Effectiveness, Medication Optimisation, and Health Related Quality of Life. Thematic analysis highlighted the importance of the outcome framework's target audience, factors influencing the interpretation of outcomes, and the feasibility of the associated outcome measures.Conclusions: The five key outcome areas will facilitate evidence-based decisions regarding service delivery. Future work should develop a measurement plan, involving routinely collected sources of outcomes data. The feasibility of collecting outcomes in the real-world context should be considered, identifying measures which are easy to collect within existing data infrastructures. This paper describes a replicable method to gain consensus for a national approach to data collection from a strong theoretical basis using an online methodology. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to reach consensus on modifiable risk factors for a novel system of care to address Manifestations of Frailty in hospitalized older adults. Design: Consensus study. Method: A modified nominal group technique, incorporating expert group face‐to‐face interaction, review of existing evidence and pre/post‐meeting questionnaire completion was undertaken November 2019–February 2020. Results: Seventy‐one risk factors, within seven risk factor domains (pain, medication, fluid and nutrition intake, mobility, elimination, infection, additional patient factors) were considered. It was agreed that 44 risk factors incorporating patient, organizational and environmental risk factors were modifiable and should be included in a novel system of care. [ABSTRACT FROM AUTHOR]

Background: Chronic musculoskeletal pain (CMSP) is prevalent globally and places a significant burden on individuals, healthcare systems and economies. Contextually appropriate clinical practice guidelines (CPGs) on CMSP are advocated to translate evidence into practice. Aim: This study aimed to investigate the applicability and feasibility of evidence-based CPG recommendations for adults with CMSP in the primary health care (PHC) sector of South Africa (SA). Setting: The PHC sector in South Africa (SA). Methods: Consensus methodology was used, comprising two online Delphi rounds and a consensus meeting. A multidisciplinary panel of local healthcare professionals involved in CMSP management was purposefully sampled and invited to participate. The first Delphi survey considered 43 recommendations. In the consensus meeting, the results of the first Delphi round were discussed. The second Delphi round reconsidered the recommendations with no consensus. Results: Seventeen experts participated in the first Delphi round, 13 in the consensus meeting and 14 in the second Delphi round. In Delphi round two, 40 recommendations were endorsed, three were not endorsed and an additional recommendation was added. Conclusion: A multidisciplinary panel endorsed 41 multimodal clinical recommendations as applicable and feasible for the PHC of adults with CMSP, in SA. Although certain recommendations were endorsed, they may not be readily implementable in SA because of context factors. Contribution: The study forms the basis of a model of care for contextually relevant PHC of CMSP. Future research should explore factors that could influence the uptake of the recommendations into practice to optimise chronic pain care in SA. [ABSTRACT FROM AUTHOR]

Resumen: Objetivo: En el mes de septiembre de 2022, la Sociedad Española de Salud Pública y Administración Sanitaria (SESPAS) reunió un panel de personas expertas con el objetivo de definir y priorizar las políticas de salud, desde una perspectiva del conjunto del Estado, para adaptar el Sistema Nacional de Salud (SNS) a los actuales riesgos y la actual sociedad. Método: Reunión de personas expertas, estructurada siguiendo procedimientos adaptados de las técnicas de brainstorming, grupo nominal y método de consenso Rand. La relevancia y la factibilidad de las propuestas fueron valoradas individualmente por cada panelista, y se ordenaron temáticamente y en función de la mediana y la desviación cuartil de las puntuaciones de relevancia. Resultados: Los/las panelistas identificaron y priorizaron numerosas propuestas en áreas de gobernanza y financiación del SNS, reforma de la cartera de servicios y prestaciones, reforma de los recursos humanos del SNS, salud pública y políticas de salud, actuaciones frente a las desigualdades y la pobreza, y asistencia sanitaria del SNS, incluyendo la atención sociosanitaria, primaria y al final de la vida. Conclusiones: Los resultados del Encuentro muestran la urgente necesidad de abordar cambios en profundidad en muchas de las políticas de salud estatales, incluyendo una importante reconfiguración en sus estructuras de gobernanza, salud pública y atención sanitaria. También sugieren hacia dónde podrían orientarse tales cambios, conformando una guía tentativa de temas prioritarios a abordar. Abstract: Objective: In September 2022, the Sociedad Española de Salud Pública y Administración Sanitaria (SESPAS) brought together a panel of experts with the aim of defining and prioritizing health policy proposals, from the perspective of the Spanish State as a whole, to adapt the National Health System (NHS) to current risks and to contemporary/present-day society. Method: Expert meeting structured using a mix of procedures adapted from brainstorming, nominal group and Rand consensus method techniques. Relevance and feasibility of proposals identified were assessed individually by each panelist. Proposals were then ordered thematically and ranked according to the median and quartile deviation of relevance scores. Results: Panelists identified and prioritized several proposals in different areas: governance and funding of the NHS, reform of the portfolio of services and benefits and of the NHS human resources, public health and health policy, actions against inequality and poverty, and healthcare delivery reform, including socio-sanitary, primary and end-of-life care. Conclusions: The results of the meeting show the urgent need to address in-depth changes in many state-wide health policies, including a major reconfiguration of governance, public health, and health care structures. They also point out potential areas of improvement, constituting a tentative guide of prioritized issues to be addressed.

With the currently accelerating changes in pharmacists' roles in Saudi Arabia, evidence-based developmental tools are required to guide initial pharmacy education and define competencies for early career (foundation level) pharmacists' progression. This study aimed to develop a profession-wide competency framework for foundation level pharmacists in Saudi Arabia using the International Pharmaceutical Federation (FIP) Global Competency Framework (GbCF) as the source framework. An online nominal group technique was used to develop consensus on a profession-wide national competency framework in Saudi Arabia. Purposive sampling was used to recruit experts from local various pharmacy sectors. A combination of self-administered surveys and online meetings was used to measure and develop consensus. The survey items were adopted from the FIP GbCF version 2. Nine pharmacy experts participated in five iterative rounds of consensus measurement and development between July and November 2021. Consensus was achieved on appropriateness to Saudi pharmacy practice for all the behaviours in the "Pharmaceutical Public Health," "Pharmaceutical Care," and "Professional/Personal" clusters. The "Organisation and Management" cluster caused most differences of opinion. The final consensus generated a list of 125 behavioural statements for inclusion in the national competency framework. This study proposes the first competency framework for foundation level pharmacists in Saudi Arabia. The developed framework represents a consensus on competencies for foundation level pharmacists working across all pharmacy sectors and is eligible for supporting further improvement of initial pharmacy education and support excellence in pharmacists' performance to address the country's needs from pharmaceutical services. [ABSTRACT FROM AUTHOR]

Abstract Background Trials involving adults who lack capacity to provide consent rely on proxy or surrogate decision-makers, usually a family member, to make decisions about participation. Interventions to enhance proxy decisions about trial participation are now being developed. However, a lack of standardised outcome measures limits evaluation of these interventions. The aim of this study was to establish an agreed standardised core outcome set (COS) for use when evaluating interventions to improve proxy decisions about trial participation. Methods We used established methods to develop the COS including a consensus study with key stakeholder groups comprising those who will use the COS in research (researchers and healthcare professionals) and patients or their representatives. Following a scoping review to identify candidate items, we used a modified two-round Delphi survey to achieve consensus on core outcomes, with equivocal items taken to a consensus meeting for discussion. The COS was finalised following an online consensus meeting in October 2020. Results A total of 28 UK stakeholders (5 researchers, 10 trialists, 3 patient/family representatives, 7 recruiters and 3 advisors/approvers) participated in the online Delphi survey to rank candidate items from the scoping review (n = 36) and additional items proposed by participants (n = 1). Items were broadly grouped into three categories: how family members make decisions, their experiences of making decisions, and the personal aspects that influence the decision. Following the Delphi survey, 27 items were included and ten items exhibited no consensus which required discussion at the consensus meeting. Sixteen participants attended the meeting, including additional patient/family representatives invited to increase representation from this key group (n = 2). We reached consensus for the inclusion of 28 outcome items, including one selected at the consensus meeting. Conclusions The study identified outcomes that should be measured as a minimum in all evaluations of interventions to enhance proxy decisions about trials. These relate to the process of decision-making, proxies’ experience of decision-making, and factors that influence decision-making such as understanding. Further work with people with impairing conditions and their families is needed to explore their views about the COS and to identify appropriate outcome measures and timing of measurement. Trial registration The study is registered on the COMET database ( https://www.comet-initiative.org/Studies/Details/1409 )

Abstract Background Shoulder pain is a highly prevalent condition and a significant cause of morbidity and functional disability. Current data suggests that many patients presenting with shoulder pain at the primary care level are not receiving high quality care. Primary care decision-making is complex and has the potential to influence the quality of care provided and patient outcomes. The aim of this study was to develop a clinical decision-making tool that standardizes care and minimizes uncertainty in assessment, diagnosis, and management. Methods First a rapid review was conducted to identify existing tools and evidence that could support a comprehensive clinical decision-making tool for shoulder pain. Secondly, provincial consensus was established for the assessment, diagnosis, and management of patients presenting to primary care with shoulder pain in Alberta, Canada using a three-step modified Delphi approach. This project was a highly collaborative effort between Alberta Health Services’ Bone and Joint Health Strategic Clinical Network (BJH SCN) and the Alberta Bone and Joint Health Institute (ABJHI). Results A clinical decision-making tool for shoulder pain was developed and reached consensus by a province-wide expert panel representing various health disciplines and geographical regions. This tool consists of a clinical examination algorithm for assessing, diagnosis, and managing shoulder pain; recommendations for history-taking and identification of red flags or additional concerns; recommendations for physical examination and neurological screening; recommendations for the differential diagnosis; and care pathways for managing patients presenting with rotator cuff disease, biceps pathology, superior labral tear, adhesive capsulitis, osteoarthritis, and instability. Conclusions This clinical decision-making tool will help to standardize care, provide guidance on the diagnosis and management of shoulder pain, and assist in clinical decision-making for primary care providers in both public and private sectors.

Abstract Background Systematic reviews often conclude low confidence in the results due to heterogeneity in the reported outcomes. A Core Outcome Set (COS) is an agreed standardised collection of outcomes for a specific area of health. The outcomes included in a COS are to be measured and summarized in clinical trials as well as systematic reviews to counteract this heterogeneity. Aim The aim is to identify, compile and assess final and ongoing studies that are prioritizing outcomes in the area of pregnancy and childbirth. Methods All studies which prioritized outcomes related to pregnancy and childbirth using consensus method, including Delphi surveys or consensus meetings were included. Searches were conducted in Ovid MEDLINE, EMBASE, PsycINFO, Academic Search Elite, CINAHL, SocINDEX and COMET databases up to June 2021. For all studies fulfilling the inclusion criteria, information regarding outcomes as well as population, method, and setting was extracted. In addition, reporting in the finalized studies was assessed using a modified version of the Core Outcome Set–STAndards for Reporting. Results In total, 27 finalized studies and 42 ongoing studies were assessed as relevant and were included. In the finalized studies, the number of outcomes included in the COS ranged from 6 to 51 with a median of 13 outcomes. The majority of the identified COS, both finalized as well as ongoing, were relating to physical complications during pregnancy. Conclusion There is a growing number of Core Outcome Set studies related to pregnancy and childbirth. Although several of the finalized studies follow the proposed reporting, there are still some items that are not always clearly reported. Additionally, several of the identified COS contained a large number (n > 20) outcomes, something that possibly could hinder implementation. Therefore, there is a need to consider the number of outcomes which may be included in a COS to render it optimal for future research.

Background: Single-sided deafness (SSD) has functional, psychological, and social consequences. Interventions for adults with SSD include hearing aids and auditory implants. Benefits and harms (outcome domains) of these interventions are until now reported inconsistently in clinical trials. Inconsistency in reporting outcome measures prevents meaningful comparisons or syntheses of trial results. The Core Rehabilitation Outcome Set for Single-Sided Deafness (CROSSSD) international initiative used structured communication techniques to achieve consensus among healthcare users and professionals working in the field of SSD. The novel contribution is a set of core outcome domains that experts agree are critically important to assess in all clinical trials of SSD interventions.Methods: A long list of candidate outcome domains compiled from a systematic review and published qualitative data, informed the content of a two-round online Delphi survey. Overall, 308 participants from 29 countries were enrolled. Of those, 233 participants completed both rounds of the survey and scored each outcome domain on a 9-point scale. The set of core outcome domains was finalised via a web-based consensus meeting with 12 participants. Votes involved all stakeholder groups, with an approximate 2:1 ratio of professionals to healthcare users participating in the Delphi survey, and a 1:1 ratio participating in the consensus meeting.Results: The first round of the survey listed 44 potential outcome domains, organised thematically. A further five outcome domains were included in Round 2 based on participant feedback. The structured voting at round 2 identified 17 candidate outcome domains which were voted on at the consensus meeting. Consensus was reached for a core outcome domain set including three outcome domains: spatial orientation, group conversations in noisy social situations, and impact on social situations. Seventy-seven percent of the remaining Delphi participants agreed with this core outcome domain set.Conclusions: Adoption of the internationally agreed core outcome domain set would promote consistent assessment and reporting of outcomes that are meaningful and important to all relevant stakeholders. This consistency will in turn enable comparison of outcomes reported across clinical trials comparing SSD interventions in adults and reduce research waste. Further research will determine how those outcome domains should best be measured. [ABSTRACT FROM AUTHOR]

Background/purpose: The implementation of competency-based medical education is a social construction process within a local and cultural context. However, little is known about the process of adaptation to different systems, known as "glocalization". We analyzed the documents in the development of a milestone project from adapting global standards into a local context and identified a framework underlying this process.Methods: Taiwan Society of Emergency Medicine (TSEM) had developed learning milestones based on the ACGME's version through series of consensus methods including committee work, nominal group technique (NGT), and a modified Delphi method. We applied qualitative content analysis to characterize the evolution of the three versions of TSEM and the original ACGME milestones documents and to explore the meaning behind the differences revealed by the glocalization process.Results: We found 48 differences between ACGME and TSEM milestones. Among these differences, one was made by committee work, 44 came from NGT, and 3 were from the modified Delphi process. Two themes and seven sub-themes emerged from the coding process to explain the contextualization process of the milestones.Conclusion: We identified a framework that incorporates local expression and local needs into the process called glocalization through which global models of competency-based standards could be optimally implemented in a local context with different systems and cultures. [ABSTRACT FROM AUTHOR]

Background: The number and efficacy of indicators used to monitor and improve the quality of care in Intensive Care Units (ICU) is debatable. This study aimed to select a consensus-based core set of indicators for effective quality improvement in the ICU.Methods: A Delphi study with a panel of intensivists, ICU nurses, and former ICU patients or relatives (n = 34) from general, teaching, and academic hospitals. Panelists completed a questionnaire in which they scored 69 preselected quality indicators on relevance using a nine-point Likert scale. Indicators were categorized using the rated relevance score into: 'accepted, 'equivocal' and 'excluded'. Questionnaire results were discussed in focus groups to reach consensus on the final set.Results: Response rates for the questionnaire and focus groups were 100 and 68%, respectively. Consensus was reached on a final set of 17 quality indicators including patient reported outcome measures (PROMs) and patient reported experience measures (PREMs). Other quality indicators relate to the organization and outcome of ICU care, including safety culture, ICU standardized mortality ratio, and the process indicator 'learning from and improving after serious incidents'.Conclusions: ICU clinicians and former patients and relatives developed a consensus-based core set of ICU quality indicators that is relatively short but comprehensive and particularly tailored to end-users needs. [ABSTRACT FROM AUTHOR]

CDKL5 Deficiency Disorder (CDD) is a rare, X-linked dominant condition that causes a developmental and epileptic encephalopathy (DEE). The incidence is between ~ 1:40,000 and 1:60,000 live births. Pathogenic variants in CDKL5 lead to seizures from infancy and severe neurodevelopmental delay. During infancy and childhood, individuals with CDD suffer impairments affecting cognitive, motor, visual, sleep, gastrointestinal and other functions. Here we present the recommendations of international healthcare professionals, experienced in CDD management, to address the multisystem and holistic needs of these individuals. Using a Delphi method, an anonymous survey was administered electronically to an international and multidisciplinary panel of expert clinicians and researchers. To provide summary recommendations, consensus was set, a priori , as >70% agreement for responses. In the absence of large, population-based studies to provide definitive evidence for treatment, we propose recommendations for clinical management, influenced by this proposed threshold for consensus. We believe these recommendations will help standardize, guide and improve the medical care received by individuals with CDD. [ABSTRACT FROM AUTHOR]

Objective: To identify what matters to clinicians and patients when discussing cancer medicines' impact on health-related quality of life (HRQoL). Methods: A framework of HRQoL domain/domain elements was developed, informed by analysis of published patient reported outcome measures (PROMs), applicable to prostate cancer. Using mixed methods (eDelphi, Nominal Group Technique and questionnaire), prostate cancer clinicians and patients attending prostate cancer clinics and support groups were asked which domains/domain elements would be important to them when discussing the impact prostate cancer medicines have on their HRQoL. Results: Twenty-one clinicians and 71 patients participated from the West of Scotland. Clinicians and patients identified 53/62 domain elements across seven domains as important, of which 32 (60%) were common to both groups. Clinicians placed more importance than patients on Mood & Emotion; in contrast, patients placed importance on a broader range of Symptoms & Side Effects, being informed about their care, and having effective healthcare professional collaboration. Conclusion: This study provides insight into the similarities and differences between what clinicians and patients think is important when discussing the impact of cancer medicines on HRQoL. Future research should involve exploring the potential for consistency of medicines PROMs across different cancer types to support patient-clinician communication and drive improvements in care. [ABSTRACT FROM AUTHOR]

Abstract Background As the development of core outcome sets (COS) increases, guidance for developing and reporting high-quality COS continues to evolve; however, a number of methodological uncertainties still remain. The objectives of this study were: (1) to explore the impact of including patient interviews in developing a COS, (2) to examine the impact of using a 5-point versus a 9-point rating scale during Delphi consensus methods on outcome selection and (3) to inform and contribute to COS development methodology by advancing the evidence base on COS development techniques. Methods Semi-structured patient interviews and a nested randomised controlled parallel group trial as part of the Pelvic Girdle Pain Core Outcome Set project (PGP-COS). Patient interviews, as an adjunct to a systematic review of outcomes reported in previous studies, were undertaken to identify preliminary outcomes for including in a Delphi consensus survey. In the Delphi survey, participants were randomised (1:1) to a 5-point or 9-point rating scale for rating the importance of the list of preliminary outcomes. Results Four of the eight patient interview derived outcomes were included in the preliminary COS, however, none of these outcomes were included in the final PGP-COS. The 5-point rating scale resulted in twice as many outcomes reaching consensus after the 3-round Delphi survey compared to the 9-point scale. Consensus on all five outcomes included in the final PGP-COS was achieved by participants allocated the 5-point rating scale, whereas consensus on four of these was achieved by those using the 9-point scale. Conclusions Using patient interviews to identify preliminary outcomes as an adjunct to conducting a systematic review of outcomes measured in the literature did not appear to influence outcome selection in developing the COS in this study. The use of different rating scales in a Delphi survey, however, did appear to impact on outcome selection. The 5-point scale demonstrated greater congruency than the 9-point scale with the outcomes included in the final PGP-COS. Future research to substantiate our findings and to explore the impact of other rating scales on outcome selection during COS development, however, is warranted.

CDKL5 Deficiency Disorder (CDD) is a rare, X-linked dominant condition that causes a developmental and epileptic encephalopathy (DEE). The incidence is between ~ 1:40,000 and 1:60,000 live births. Pathogenic variants in CDKL5 lead to seizures from infancy and severe neurodevelopmental delay. During infancy and childhood, individuals with CDD suffer impairments affecting cognitive, motor, visual, sleep, gastrointestinal and other functions. Here we present the recommendations of international healthcare professionals, experienced in CDD management, to address the multisystem and holistic needs of these individuals. Using a Delphi method, an anonymous survey was administered electronically to an international and multidisciplinary panel of expert clinicians and researchers. To provide summary recommendations, consensus was set, a priori, as >70% agreement for responses. In the absence of large, population-based studies to provide definitive evidence for treatment, we propose recommendations for clinical management, influenced by this proposed threshold for consensus. We believe these recommendations will help standardize, guide and improve the medical care received by individuals with CDD.

Background: Given the high incidence of falls and their associated negative effects, the development of effective falls prevention interventions for people with Multiple Sclerosis (MS), Parkinson's Disease (PD) and stroke is a priority. Currently the implementation of condition-specific falls prevention interventions is challenging in the community due to lack of participants and resources. Given the similarities in falls risk factors across stroke, PD and MS, the design of mixed-diagnosis interventions for groups comprising of people with these three neurological conditions may solve these implementation challenges. Having a core outcome set (COS) for evaluating these interventions would enable the comparison and combination of data, thereby facilitating progress in this research area. Therefore, the aim of this research study is to develop a COS for evaluating mixed-diagnosis falls prevention interventions for people with MS, PD and stroke. Methods: This will be a mixed-methods, international, multi-perspective Delphi consensus study with five stages. Stage one will involve the identification of potential outcomes through a systematic literature search, patient focus groups, and consultation with our stakeholder group. The second stage will be the development of the Delphi survey using the outcomes elicited from stage one. Stage three will be the prioritisation of outcomes using a two-round online Delphi survey involving patients, clinicians, researchers and policy-makers/service-planners. The fourth stage will be to identify and recommend outcome measures and definitions. The final stage will be a consensus meeting with representatives from each stakeholder group to agree upon the final COS. Discussion: Adoption of this COS in future trials investigating the effectiveness of mixed-diagnosis falls prevention interventions for people with MS, PD and stroke will facilitate the comparison and combination of research findings. This should translate into improved decision-making by service-planners/policy-makers and clinicians regarding the implementation of evidence-based falls prevention interventions into practice.