ABSTRACT Objective To determine the uptake and recommendations for revision of the 2018 Clinical Practice Guideline (CPG): Core Set Outcome Measures for Adults with Neurologic Conditions Undergoing Rehabilitation. Design Online Survey. Setting Online with participants from multiple settings. Participants Licensed physical therapists (PT) or physical therapist assistants (PTA) or a non‐PT supervisor of PTs and/or PTAs. Interventions N/A. Main Outcome Measures An online survey was developed to determine respondents' knowledge, perceived benefits, challenges, gaps, and modifications made to the 2018 CPG as well as to ascertain respondents' recommendations for the CPG revision. Data were analyzed descriptively by respondent role (clinician, educator/researcher, or supervisor/manager). Respondents' narrative comments were coded into 3 categories: implementation challenges, modifications, and revision recommendations. Results Four hundred and ninety‐seven individuals accessed the survey. Seventy‐six percent (379) completed 80% of items. Two hundred and forty‐one (63.5%) identified their primary role as clinician. The majority (99%) agreed they understood the purpose, process and recommendations of the CPG; 70% agreed that the CPG changed their practice. More than 70% agreed the CPG‐recommended Core Set provided a comprehensive assessment of balance and gait. Narrative comments revealed implementation challenges including lack of time, space and buy‐in. Clinicians made modifications to the Core Set including using fewer measures, adding other measures and modifying measures (e.g. changing distances, providing patient assistance). Suggestions for the CPG revision included adding higher and lower‐level measures. Conclusions Despite reported barriers to clinical implementation of CPGs, survey respondents overwhelmingly reported gaining knowledge and changing practice in response to the 2018 CPG. They recommended the revision include measures to capture both higher‐ and lower‐level activities. Future CPG developers should consider assessing uptake and recommendations to help guide CPG revisions.
ABSTRACT Introduction Clinical Practice Guidelines (CPGs) facilitate evidence‐based decision‐making and standardising care, yet their dissemination and scholarly uptake vary widely. The Core Set of Outcome Measures for Adults With Neurologic Conditions Undergoing Rehabilitation CPG (Core Set) has been broadly referenced within neurologic physical therapy. As the next revision approaches, understanding its scholarly influence, citation patterns, and published feedback is essential. This study evaluated the dissemination and use of the Core Set across the peer‐reviewed literature and identified areas for refinement. Methods A medical librarian conducted comprehensive searches of Web of Science, CINAHL, and Scopus to identify peer‐reviewed English‐language articles citing the Core Set between July 1, 2018, and July 31, 2024. Reviewer pairs screened articles and extracted publication characteristics, citation context using an adapted Rabin et al. and Field et al. framework, and narrative feedback. Quantitative data were summarised descriptively. Constructive and positive feedback were thematically coded. Altmetric Attention Score, PlumX captures, and Mendeley readership data characterised broader dissemination and engagement. Results Of 388 records, 176 articles met inclusion criteria. Most articles cited the Core Set once ( n = 106), most frequently in the introduction ( n = 70) or methods ( n = 65). Thirty‐two percent ( n = 57) reported that the Core Set informed study design, guided outcome measure selection, or was implemented in practice. Studies represented 30 countries, with the United States contributing the largest proportion ( n = 104). Constructive feedback (14 articles) highlighted needs related to standardisation procedures, diagnosis‐specific applicability, construct coverage, and feasibility. Positive feedback (9 articles) emphasised methodological clarity, usability, and clinical value. Dissemination indicators demonstrated broad engagement, including an Altmetric Attention Score of 60, 261 scholarly citations, 643 PlumX captures, and 604 Mendeley readers. Discussion Findings support maintaining the Core Set's methodological rigour while providing some suggestions for improvement.
ABSTRACT Patient and public involvement (PPI) is increasingly recognised as essential to the development of trustworthy and relevant clinical guidelines. However, guideline developers face persistent challenges in implementing best‐practice PPI, including developing an appropriate PPI strategy, recruiting and supporting patients, and including diverse perspectives. The Guidelines International Network (GIN) Public Working Group developed the GIN Public Toolkit to address these challenges and support meaningful involvement across the guideline development lifecycle. This commentary outlines the Toolkit's background, purpose, structure, global impact and future directions. Freely available online, the Toolkit provides practical guidance and case examples based on the experiences of guideline developers around the world. Since its launch in 2015, the Toolkit has evolved to include 10 chapters delivered via dual‐format: e‐print and a website. Website analytics and citation data indicate the Toolkit's growing global reach, supported by the ongoing chapter translations, training and dissemination activities. The Toolkit's vision is to remain a living resource that is shaped by collaboration and is responsive to guideline developer's needs. Future directions include increasing the Toolkit's accessibility through further translations, refining citation practices and targeted promotion and dissemination strategies. The GIN Public Toolkit continues to build global capacity for meaningful PPI in guideline development.
ABSTRACT Introduction Physical activity guidelines and their supplementary messaging play a fundamental role in raising awareness and increasing knowledge at a population level. In the United Kingdom, there are no national‐level messaging campaigns accompanying the strength component of their physical activity guidelines for public health. Perhaps unsurprisingly, then, research indicates a very low awareness of and adherence to the strength component of these guidelines. Methods This study used the Physical Activity Messaging Framework (PAMF) during a participatory workshop to inform messaging guidance aimed to accompany the UK's Chief Medical Officers' muscle‐strengthening guidelines. We focused on a subgroup of middle‐aged women. Twenty adults ( n = 18 females) aged 40–60 years residing in the Greater Manchester area participated in one, 4‐h, in‐person workshop. Participants were in the contemplation, preparation, action, maintenance, or termination stage of the Transtheoretical Model of behaviour change. The focus group activities and resulting discussions aligned with the PAMF to identify message content, format, and delivery that resonated with the target audience. Results and Discussion Discussions revealed that it is simply not enough to tell people to do muscle‐strengthening exercise (even when including information about frequency, muscle groups, or intensity) if we hope to increase self‐efficacy, competence, or change behaviour. Individuals need more details on how to practically participate in muscle‐strengthening exercise. Those who do not know how or who do not feel confident they know enough, simply will not start, revealing a clear enactment barrier. As a solution, participants proposed that future messaging campaigns include links to more detailed information on how to participate in muscle‐strengthening exercise, practically and effectively. This is the first study to use the PAMF to develop messaging recommendations for (inter)national‐level mass media campaigns aligned to the muscle‐strengthening guidelines.
ABSTRACT Introduction Currently, there is limited insight into public understanding and opinion of physical activity guidelines (PAG) despite the acknowledged importance of communicating such health‐related information. This study aimed to explore adults' understanding and opinions of current UK Chief Medical Officer's PAG (UKCMOPAG) in addition to messaging preferences to inform effective communication of future PAG. Methods Qualitative semi‐structured one‐to‐one interviews were conducted with 17 adults (52% female, mean age 33.1 years) in Scotland, United Kingdom. The interview schedule included open‐ended questions developed to explore understanding and opinion of guidelines, and preferences for communication using the physical activity messaging framework. Data were analysed using framework analysis. Results Participants were aware that PAG likely existed but could not accurately recall them. Once informed of the UKCMOPAG, they found them unappealing and unclear. They expressed uncertainty about the intended audience and questioned their relevance across different groups. Participants were, however, aware of some benefits of PA and had lived experience of short‐term benefits (e.g., improved sleep and mood). As such, there was a preference for communicating UKCMOPAG through positive, relatable messages emphasising everyday benefits. Participants disliked threshold messages, suggesting continuum‐based messages with a sliding scale of PA volume/intensity and associated benefits. Lastly, participants indicated that messages should be delivered by trustworthy sources, identified as the National Health Service (NHS). Conclusion This study is the first qualitative exploration of how the general adult population in Scotland interpret the UKCMOPAG. Findings show that current communication strategies are not aligned to public understanding and opinions of PAG, indicating a need to change communication approaches. Future updates should separate technical guidance from public‐facing messages, use relatable language, inclusive examples and ensure delivery by trusted sources. Continuum‐ and gain‐framed messaging highlighting short‐term PA benefits may also improve engagement. Further research is needed to evaluate the effectiveness of such audience‐centred messages.
ABSTRACT Introduction It has been estimated to take 17 years for research to change clinical practice. Scientific Knowledge Accelerator Foundation aims to narrow this research‐practice gap, hypothesising that making scientific evidence computable will accelerate the pace of knowledge transfer. We designed this study to develop a reusable process for measuring the rate of knowledge transfer from clinical trials to practice guidelines to evaluate the effectiveness of our efforts in the years to come. Methods Our study uses citation in clinical guidelines as a proxy for use of research in practice. We will evaluate a convenience sample of randomised controlled trials (RCTs), trace their citations in the clinical literature, and measure the length of time it takes for RCT results to be incorporated into recommendations for clinical practice. For each ‘index article’ in our convenience sample, we will record the date its results were publicly available (including preprint date and date of posting results in a registry, if applicable). Then, we will identify articles that cite the index article, sorting by date to find the earliest use of the RCT findings to inform an evidence‐based recommendation for clinical practice. To qualify, these articles will meet three criteria: (1) systematically derived, (2) incorporating the RCT in the results section of the article and (3) making a recommendation intended to inform clinical practice. Review articles meeting the first two criteria will be checked for their use in subsequent generation of recommendations. Discussion This study will develop a process to approach the question, ‘How long does it take for results of clinical trials to be incorporated into published systematically derived recommendations intended to guide clinical practice?’
ABSTRACT Background The Australasian Bronchiolitis Guideline (ABG) provides evidence‐based recommendations for managing one of the most frequent reasons for infant hospitalisation. As traditional guidelines age, they suffer from lack of relevance when new evidence is available but not incorporated. To address this limitation a guideline, or parts thereof, can be converted into a “living” mode, where new evidence is regularly incorporated into recommendations, enabling faster translation to practice. This study aimed to prioritise ABG recommendations for conversion to a living mode. Method Members of the 2025 ABG Guideline Advisory Group and Guideline Development Committee were invited to participate in an online, modified Delphi study. Panellists ranked 38 recommendations as low, medium, or high priority for conversion to a living mode across two rounds. A consensus threshold of ≥ 75% agreement was used. Data collection ceased once consensus was reached on ≥ 4 recommendations for conversion. Results Twenty‐five of 29 (86%) experts responded in round one and 20/25 (80%) in round two. Panel diversity was maintained throughout voting rounds. At round one, consensus was reached to convert three recommendations to a living format and 11/38 recommendations were excluded. At round two, one additional recommendation was prioritised for conversion and 16/24 were excluded. Consensus was not reached on seven recommendations. Conclusion Four key management recommendations will be converted to a living mode: high‐flow therapy, combined glucocorticoid/adrenaline therapy, oxygen saturation targets, and chest X‐ray in intensive care settings. These recommendations will be regularly updated as new evidence becomes available, supporting a more rapid translation to clinical practice.
ABSTRACT Introduction Achalasia causes significant distress and quality‐of‐life impairment to patients. Several options exist for the treatment of achalasia including endoscopic [intra‐sphincteric injection of botulinum toxin, pneumatic dilation, peroral endoscopic myotomy (POEM)], and surgical techniques such as Heller Myotomy. Methods This guideline will adhere to robust methodological standards according to GIN, GRADE, and AGREE‐S. We will develop a clinical practice guideline addressing the treatment of patients with achalasia. A systematic review group will perform an evidence synthesis and network meta‐analysis before appraising the certainty of evidence. An international, multidisciplinary panel will review the evidence and develop recommendations using the evidence‐to‐decision framework. The panel will be comprised of gastroenterologists, gastrointestinal surgeons, and patient partners. We will collect and address conflicts of interest for all guideline development group members. We will present this clinical practice guideline at international congresses and publish in the Journal of Surgical Endoscopy & Other Interventional Techniques . Questions We will conduct a clinical practice guideline to provide evidence‐informed treatment recommendations for patients with achalasia. We will examine the following questions: In patients with type I achalasia, what is the relative impact of Botox injection versus pneumatic dilation versus POEM versus Heller myotomy alone versus Heller myotomy with fundoplication on patient‐important outcomes? In patients with type II achalasia, what is the relative impact of Botox injection versus pneumatic dilation versus POEM versus Heller myotomy alone versus Heller myotomy with fundoplication on patient‐important outcomes? In patients with type III achalasia, what is the relative impact of Botox injection versus pneumatic dilation versus POEM versus Heller myotomy alone versus Heller myotomy with fundoplication on patient‐important outcomes?
ABSTRACT Introduction Clinical practice guidelines are essential in improving oncology healthcare by translating scientific evidence into practice. Evaluating and comparing guidelines for the same medical condition across organizations and countries aids in assessing their validity. However, inconsistencies in their format and the topics covered hamper large‐scale efficient guideline comparisons. This study applies a technical format to guidelines from two regions and introduces a computational method for systematic guideline comparison. Methods For every decision‐making moment identified in the Dutch and US guidelines for endometrial cancer clinical decision trees (CDTs) were developed. These were organized into coherent care pathways and classified according to an oncological reference model. Subsequently, calculations and content comparisons were performed on the revealed concepts at a semantic level. Lastly, recommendations were compared across the subpopulation(s) defined within each CDT. Results The method identified similarities, relations and differences at various levels between both guidelines. Analyses yielded 17 CDTs, 33 population characteristics and 75 interventions for the Dutch guideline, while the corresponding figures for the US guideline were 20, 61 and 111, respectively. Within the CDTs, 11 matching subpopulations were identified, of which 2 had identical recommendations, 5 had related recommendations and 4 showed mismatched recommendations. Discussion The current computational approach supports structured comparisons in research settings and allows for application in clinical practice via a developed dashboard prototype. Computational guideline representations reveal gaps, differences and similarities across multiple levels. The study underscores the potential for increased utility of computable guidelines, with the developed method also applicable to various other rule‐based instruments.
ABSTRACT Health systems contribute to environmental degradation while simultaneously being affected by its consequences. Yet, planetary health considerations are largely absent from health guidelines. On November 6–7, 2024, the Planetary Health Expert Workshop convened over 50 experts from the GRADE Planetary Health Project Group at Humanitas University, Italy, to explore methods for embedding planetary health into health guideline development. Through presentations, case studies, and group discussions, participants identified key methodological gaps and proposed processes and tools to advance the integration of planetary health in health guidelines. Case studies highlighted the need to balance clinical effectiveness with long‐term planetary impacts. This workshop demonstrates a strong interest in integrating planetary health considerations into health guidelines, ensuring evidence‐based health recommendations are not only effective for individuals but also reduce planetary boundary transgressions, restoring Earth's natural systems.
Abstract Background Myocardial infarction (MI) remains a major global health burden, with percutaneous coronary intervention (PCI) as the primary revascularization strategy. However, complications such as no‐reflow, reperfusion injury and in‐stent restenosis persist, requiring adjunctive therapies. Traditional Chinese Medicine (TCM), especially blood‐activating and stasis‐resolving Chinese patent medicine (CPM), is increasingly used in MI management. Objective To develop a living clinical practice guideline for the perioperative use of CPMs in the perioperative period of PCI for MI, based on rigorous and transparent methodology. Methods The guideline followed the WHO Handbook for Guideline Development, methods for developing integrated Chinese–Western medicine guidelines, and the living guideline framework. It will be reported in accordance with the RIGHT‐TCM extension. Clinical questions and outcomes were framed, selected and rated through structured discussions with the Guideline Steering Committee and the Guideline Development Group. A systematic review and Bayesian network meta‐analysis will evaluate the efficacy and safety of CPM. The certainty of evidence will be assessed using the GRADE approach, and recommendations will be formulated via the Evidence‐to‐Decision framework, incorporating benefits, harms, evidence certainty, feasibility and costs. When new clinical studies are included and critical outcomes' combined effect demonstrates directional or magnitude changes, the consensus and guideline development groups will jointly decide on new updates. Conclusion By addressing key clinical uncertainties and leveraging real‐time evidence updates, the guideline aims to enhance patient outcomes and support clinicians in decision‐making. Trial Registration: Guideline Registration Number: PREPARE‐2024CN596
ABSTRACT Aim To synthesise quantitative evidence on the values and preferences of people living with Motor Neurone Disease (MND), caregivers, and genetic carriers regarding health‐related outcomes to inform the Australian MND Guideline. Methods A systematic review was conducted following Cochrane and GRADE guidance, informed by an a priori protocol. Major electronic databases (including MEDLINE, Embase, CENTRAL) and trial registries were searched to identify studies that met the eligibility criteria. Risk of bias of the studies that met the eligibility criteria was assessed using the Risk of Bias in Studies of Values and Utilities (ROBVALU) tool. Data on health state utility values were synthesised using meta‐analysis where appropriate, while other quantitative data deemed inappropriate for meta‐analysis were synthesised narratively. The certainty of the evidence for each outcome was assessed using the GRADE approach. Results Twenty‐four studies ( n = 10,397) were included. Overall health‐related quality of life (hrQoL) utility values for adults with MND varied significantly based on the regional preference set utilised (mean EQ‐5D utility ranging from 0.57 in UK cohort (high certainty in the evidence) to 0.72 in Chinese cohorts (low certainty in the evidence). Utility values declined consistently with increasing disease severity across multiple staging systems, such as King's and MiToS. Narrative synthesis identified clear preferences across physical, psychosocial, and healthcare domains regarding both current and hypothetical treatment strategies. Conclusion This review provides a comprehensive synthesis of the values and preferences of the broad MND community. This review has been conducted following rigorous best‐practice methodology, to directly inform the selection and prioritisation of outcomes for the development of the Australian MND Guideline, ensuring the guideline adheres to a patient‐centred approach. Standardisation of preference elicitation methods from the MND community, and the development of a core outcome set for future MND research are key future priorities.
Healthcare guidelines are necessary to optimise patient care and improve health outcomes; however, guidelines alone are insufficient to ensure changes in practice. This overview of reviews aims to identify, map and report on the effectiveness of knowledge translation (KT) strategies to implement guideline recommendations. We will conduct this study in accordance with the Cochrane Handbook guidance on overviews of reviews. We will search MEDLINE, CRD, SCOPUS, Cochrane Library, Web of Science, Health Systems Evidence, Epistemonikos, CINAHL and Embase. Eligible studies will include systematic reviews evaluating KT interventions for guideline implementation, regardless of the healthcare condition or system level. Teams of reviewers will independently screen and extract data on systematic review characteristics, interventions, outcomes (process‐, healthcare professional‐, patient‐ and economic‐related and other), contextual factors and review limitations. The same reviewers will assess risk of bias among included reviews using A MeaSurement Tool to Assess Systematic Reviews 2 (AMSTAR 2). We will synthesise the evidence by classifying intervention effectiveness into the following categories: (1) desirable effect, (2) little or no effect, (3) undesirable effect and (4) uncertain effect, along with the certainty of evidence, if reported. We will present our findings through a narrative synthesis, tabular formats, and an evidence gap map to visualise the evidence landscape. This overview of reviews will provide a summary of KT strategies and their effectiveness for improving guideline implementation. These findings will offer actionable guidance for key interest‐holders: investigators can utilise the evidence gap map to identify research priorities; guideline developers can identify effective strategies for increasing uptake of recommendations; and funders can optimise resource allocation by directing support towards evidence‐based dissemination strategies.
The delivery of healthcare in the out‐of‐hospital setting by paramedics, emergency medical technicians, and first responders is informed by various health guidelines that cover a myriad of medical presentations. These guidelines often score poorly on quality assessment tools and do not routinely meet accepted standards for guideline development. To address this, we propose the development of an extension to the Guideline International Network (GIN)‐McMaster Guideline Development Checklist (GDC) to assist developers of health guidelines on out‐of‐hospital care. The aim of this project are to: (i) identify the current methodologies, approaches and processes used by developers of guidelines on out‐of‐hospital care and determine how they align with the original GIN‐McMaster GDC; (ii) understand the overarching barriers and enablers of guideline development in this setting; (iii) generate a fit‐for‐purpose extension through an iterative consensus‐based approach; and (iv) disseminate this document to target users. This protocol outlines the proposed development of an extension to the GIN‐McMaster GDC, designed specifically for developers of health guidelines on out‐of‐hospital care. The development of this extension will be informed by understanding current practices and the determinants that influence guideline development in this setting. This will involve reviewing all items within the original checklist to determine if modifications and/or new items are required.
Antimicrobial resistance (AMR) is a widely recognized threat to global health, mainly driven by the inappropriate use of antimicrobials. Recommendations from evidence‐based practice guidelines (EBPGs) can promote appropriate antimicrobial use. Currently, no guidance exists for considering AMR in EBPGs. This is the protocol for two studies that aim to (1) develop a checklist of AMR considerations for EBPGs and (2) conduct a case study to evaluate existing EBPGs regarding the extent to which AMR is considered among other methodological assessments. Using the Delphi technique, we will consult with individuals from four interest‐holder groups to develop and refine a checklist of AMR considerations for EBPGs. To assess EBPGs, we will search various databases for guidelines on four prioritized syndromes (i.e., community‐acquired pneumonia, urinary tract infection, skin and soft tissue infections and exacerbations of chronic obstructive pulmonary disease). We will screen articles in duplicate and in stages to include EBPGs for the prioritized syndromes and will use piloted data extraction forms to extract characteristics of the EBPGs. For each EBPG, we will evaluate whether AMR was considered (using the developed checklist), its trustworthiness (i.e., methodological quality) (using the modified National Guideline Clearinghouse Extent of Adherence to Trustworthy Standards instrument) and its adaptability (using items from existing adaptability frameworks). This work will develop a checklist of AMR considerations for EBPGs and evaluate a subsequent sample of EBPGs to investigate the extent to which AMR is considered. Furthermore, by conducting a methodological appraisal of trustworthiness and adaptability, this study will contextualize results to promote the uptake and appropriate interpretation of existing guidelines. Thus, these findings will be useful to decision‐makers as well as guideline development groups as they highlight what existing work can be trusted and leveraged while also identifying what limitations and gaps need to be addressed.
We compared the reporting of patient and public involvement (PPI) in the development of clinical practice guidelines (CPG) with the guidance regarding PPI in the auspicing organisation's guideline development manual. We examined the PPI guidance provided by seven guideline auspicing organisations from four countries, that provided guideline development manuals referencing PPI inclusion in guideline development. We determined whether the auspicing organisations provided guidance on four aspects of PPI critical to understanding the process; (i) which patients and public (PPs) to involve, (ii) how to recruit PPs, (iii) where in the process to involve PPs, and (iv) how PPs should contribute to guideline development. We assessed a random selection of 24 CPGs affiliated with these organisations for consistency of reporting of PPI with the guidance provided. Half (50%) of the auspicing organisations' guideline development manuals provided guidance on all four aspects of PPI. Five of the 24 CPGs (21%) affiliated with auspicing organisations that made reference to PPI in guideline development did not report PPI in their development. Although 79% (19/24) of guidelines did report PPI in their development, only half (10/19) reported PPI that was consistent with the auspicing organisations guidance. Auspicing organisations often do not provide guidance to guideline developers on critical aspects of PPI. Even when auspicing organisations do provide guidance, CPG developers may not report PPI, and/or not report PPI consistent with that guidance. It is unknown whether this is because PPI was not conducted, or because it was conducted, but not reported, or was reported incompletely. Auspicing organisations need to improve guidance on PPI in guideline development, and CPG developers need to report PPI more diligently when it is done. Understanding guideline developers' motivations for PPI implementation and/or reporting is critical to facilitate improvement in this area.
ABSTRACT Background Patient involvement (PI) in the development of clinical practice guidelines (CPGs) is recognized as a key aspect of trustworthy and high‐quality CPGs. However, difficulties exist and PI is not yet consistently implemented in the development of CPGs. Our study aimed at exploring the experiences and perspectives of patients and their representatives regarding their involvement in CPG development processes and to unravel existing challenges. Methods Qualitative semi‐structured interviews were conducted with patient representatives who already participated in the development of a German evidence‐ and consensus‐based CPG. The interviews were conducted using a semi‐structured interview guide developed a priori. They took place via the online meeting tool WebEx and were digitally recorded. The interview data was analyzed using qualitative content analysis as described by Mayring using MAXQDA. Results In total, we conducted 23 interviews from November 2024 to February 2025. Participation in CPG development processes as active and contributing member of the guideline development group was emphasized as the dominating involvement strategy. For a positive PI experience, participants emphasized several influencing factors such as preparatory training, participation of other patient representatives, and appreciation from other guideline group members. Moreover, several challenges were anticipated for the future, for instance the recruitment of patients as well as the need for a more inclusive and diverse involvement. Discussion Our study found that overall participants were satisfied with the predominant involvement method of acting as participatory members in the guideline development group. Nevertheless, the findings also revealed certain unmet needs. Preparatory activities, such as targeted training sessions or meetings, were identified as essential and should become standard practice. To ensure equitable implementation, CPG developers should consider taking responsibility for preparing patient representatives to participate effectively, rather than relying on patient organizations for this.
To map the available evidence informing the care and management of people living with motor neurone disease (MND), including evidence pertaining to carers, asymptomatic genetic carriers, family, friends and healthcare professionals caring for people with MND. MND is a devasting neurodegenerative disease that has no cure and eventually leads to paralysis, progressive speech difficulties and respiratory failure. There are a plethora of interventions to support people living with MND, however, information regarding these interventions is often not organised in a manner that best supports the MND community. An evidence and gap map will provide a visual presentation that highlights the existing evidence that is available to support specific interventions, and indicate where there is no evidence. This will help inform future guideline and research efforts. Studies if they describe care interventions for people living with MND, carers, asymptomatic genetic carriers, family, friends and healthcare professionals caring for people with MND. Peer‐reviewed randomised controlled trials, and nonrandomised studies of interventions, systematic reviews and qualitative studies describing the experience of an intervention will be included. An evidence and gap map will be conducted according to Campbell guidance and JBI guidance for scoping reviews. A comprehensive search of academic databases and clinical trial registries will be performed to identify eligible studies. An evidence inclusion framework has been developed with members of the MND community. Data screening and extraction will be independently performed by two reviewers. The evidence and gap map will be presented using EPPI Reviewer. This protocol has been uploaded to the Australian Motor Neurone Disease (MND) Guideline Open Science Framework page ( https://osf.io/c2ezm/ ).
Summary The journey of guidelines being informed by evidence is less than 50 years old, but it has seen notable advances documented in various publication series and led by key organizations. Although Evidence‐to‐Decision (EtD) frameworks were officially born in 2016, since the early 2000s, groups like GRADE had begun to formulate key determinants of the recommendation‐formulation process. The EtD frameworks started with criteria such as the balance between desirable and undesirable outcomes, values and preferences, and resource use. Nowadays, they are extended to cover criteria like planetary health, human rights, and socio‐cultural acceptability. Experiences with the use of EtD frameworks are generally positive; they are flexible, facilitate multidisciplinary discussions, and bring rigor and transparency to the guidelines. More guidance is required on how to use EtD frameworks, as well as more research to understand how they can lead to better guidelines, and more recently, how artificial intelligence can responsibly help navigate this path.
