Chronic kidney disease (CKD) patients can benefit from personalized education on lifestyle and nutrition management strategies to enhance healthcare outcomes. The potential use of chatbots, introduced in 2022, as a tool for educating CKD patients has been explored. A set of 15 questions on lifestyle modification and nutrition, derived from a thorough review of three specific KDIGO guidelines, were developed and posed in various formats, including original, paraphrased with different adverbs, incomplete sentences, and misspellings. Four versions of AI were used to answer these questions: ChatGPT 3.5 (March and September 2023 versions), ChatGPT 4, and Bard AI. Additionally, 20 questions on lifestyle modification and nutrition were derived from the NKF KDOQI guidelines for nutrition in CKD (2020 Update) and answered by four versions of chatbots. Nephrologists reviewed all answers for accuracy. ChatGPT 3.5 produced largely accurate responses across the different question complexities, with occasional misleading statements from the March version. The September 2023 version frequently cited its last update as September 2021 and did not provide specific references, while the November 2023 version did not provide any misleading information. ChatGPT 4 presented answers similar to 3.5 but with improved reference citations, though not always directly relevant. Bard AI, while largely accurate with pictorial representation at times, occasionally produced misleading statements and had inconsistent reference quality, although an improvement was noted over time. Bing AI from November 2023 had short answers without detailed elaboration and sometimes just answered \"YES\". Chatbots demonstrate potential as personalized educational tools for CKD that utilize layman\'s terms, deliver timely and rapid responses in multiple languages, and offer a conversational pattern advantageous for patient engagement. Despite improvements observed from March to November 2023, some answers remained potentially misleading. ChatGPT 4 offers some advantages over 3.5, although the differences are limited. Collaboration between healthcare professionals and AI developers is essential to improve healthcare delivery and ensure the safe incorporation of chatbots into patient care.

BACKGROUND: An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation.
METHODS: We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations.
RESULTS: We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12-$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples.
CONCLUSIONS: Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised.
UNASSIGNED: The patient partner coauthor informed protocol development, identified data items, and interpreted findings.

BACKGROUND: In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024. Patients and public members formed a small but impactful stakeholder group. We critically evaluated the PPI component in this project and developed recommendations for conducting PPI when developing reporting guidelines.
METHODS: A patient partner was an integral research team member at the project development and grant application stage. Once the project started, five patient and public contributors (PPCs) were recruited to participate in the Delphi study; three PPCs contributed to subsequent steps. We collected quantitative feedback through surveys; qualitative feedback was garnered through a focus group discussion after the Delphi study and through debrief meetings after subsequent project activities. Feedback was thematically combined with reflections from the research team, and was predominantly positive. The following themes emerged: importance of PPI partnership, number of PPCs involved, onboarding, design of Delphi surveys, flexibility in the process, complexity of PPI in methodological research, and power imbalances. Impacts of PPI on the content and presentation of the reporting guideline were evident, and reciprocal learning between PPCs and the research team occurred throughout the project. Lessons learned were translated into 17 recommendations for future projects.
CONCLUSIONS: Integrating PPI in the development of PRISMA-COSMIN for OMIs 2024 was feasible and considered valuable by PPCs and the research team. Our approach can be applied by others wishing to integrate PPI in developing reporting guidelines.

UNASSIGNED: Despite efforts to provide evidence-based care for people living with kidney disease, health care provider goals and priorities are often misaligned with those of individuals with lived experience of disease. Coupled with competing interests of time, resources, and an abundance of suitable guideline topics, identifying and prioritizing areas of focus for the Canadian nephrology community with a patient-oriented perspective is necessary and important. Similar priority-setting exercises have been undertaken to establish research priorities for kidney disease and to standardize outcomes for kidney disease research and clinical care; however, research priorities are distinct from priorities for guideline development. Inclusion of people living with health conditions in the selection and prioritization of guideline topics is suggested by patient engagement frameworks, though the process to operationalizing this is variable. We propose that the Canadian Society of Nephrology Clinical Practice Guideline Committee (CSN CPGC) takes the opportunity at this juncture to incorporate evidence-based prioritization exercises with involvement of people living with kidney disease and their caregivers to inform future guideline activities. In this protocol, we describe our planned research methods to address this.
UNASSIGNED: To establish consensus-based guideline topic priorities for the CSN CPGC using a modified Delphi survey with involvement of multidisciplinary stakeholders, including people living with kidney disease and their caregivers.
UNASSIGNED: Protocol for a Modified Delphi Survey.
UNASSIGNED: Pilot-tested surveys will be distributed via email and conducted using the online platform SurveyMonkey, in both French and English.
UNASSIGNED: We will establish a group of multidisciplinary clinical and research stakeholders (both within and outside CSN membership) from Canada, in addition to people living with kidney disease and/or their caregivers.
UNASSIGNED: A comprehensive literature search will be conducted to generate an initial list of guideline topics, which will be organized into three main categories: (1) International nephrology-focused guidelines that may require Canadian commentary, (2) Non-nephrology specific guidelines from Canada that may require CSN commentary, and (3) Novel topics for guideline development. Participants will engage in a multi-round Modified Delphi Survey to prioritize a set of \"important guideline topics.\"
UNASSIGNED: Consensus will be reached for an item based on both median score on the Likert-type scale (≥ 7) and the percentage agreement (≥ 75%); the Delphi process will be complete when consensus is reached on each item. Guideline topics will then be given a priority score calculated from the total Likert ratings across participants, adjusted for the number of participants.
UNASSIGNED: Potential limitations include participant response rates and compliance to survey completion.
UNASSIGNED: We propose to incorporate evidence-based prioritization exercises with the engagement of people living with kidney disease and their caregivers to establish consensus-based guideline topics and inform future guidelines activities of the CSN CPGC.
UNASSIGNED: Malgré les efforts déployés pour fournir aux personnes atteintes de néphropathies des soins fondés sur les données probantes, il s’avère que les objectifs et priorités des prestataires de soins de santé sont souvent mal alignés avec ceux des personnes qui ont une expérience concrète de la maladie. Compte tenu des intérêts concurrents en matière de temps et de ressources, et de l’abondance de sujets pertinents pour l’élaboration de lignes directrices, il est nécessaire et important d’identifier et de hiérarchiser les domaines prioritaires pour la communauté néphrologique canadienne dans une perspective orientée vers le patient. Des exercices semblables pour la définition des priorités ont été entrepris afin d’établir les priorités de la recherche sur les maladies rénales et normaliser les soins cliniques et les résultats de la recherche sur les maladies rénales. Or, les priorités de la recherche diffèrent des priorités pour l’élaboration des lignes directrices. Bien que les façons de procéder varient, les cadres d’engagement des patients suggèrent que des personnes vivant avec des problèmes de santé soient incluses dans la sélection et la hiérarchisation des sujets des lignes directrices. À cet égard, nous proposons que le Comité sur les lignes directrices de pratique clinique de la Société canadienne de néphrologie (CSN CPGC — Canadian Society of Nephrology Clinical Practice Guideline Committee) profite de l’occasion pour intégrer des exercices d’établissement des priorités fondés sur des données probantes et impliquer des personnes vivant avec une néphropathie et des soignants afin de guider les futures activités d’élaboration de lignes directrices. Dans ce protocole, nous décrivons la méthodologie de recherche que nous suivrons pour y remédier.
UNASSIGNED: Établir des priorités consensuelles en matière de sujets de lignes directrices pour le CSN CPGC à l’aide d’une enquête Delphi modifiée et avec la participation d’intervenants multidisciplinaires, notamment des personnes vivant avec une néphropathie et leurs soignants.
UNASSIGNED: Protocole pour une enquête Delphi modifiée.
UNASSIGNED: Des sondages pilotes, en anglais et en français, seront distribués par courriel et réalisés à l’aide de la plateforme en ligne SurveyMonkey.
UNASSIGNED: Nous créerons un groupe d’intervenants multidisciplinaires canadiens œuvrant en clinique et en recherche (à la fois des membres et des non membres de la SCN) auquel s’ajouteront des personnes atteintes d’une néphropathie et/ou leurs soignants.
UNASSIGNED: Une recherche exhaustive sera effectuée dans la littérature afin de constituer une première liste de sujets de lignes directrices, laquelle sera divisée en trois catégories principales: (1) lignes directrices internationales axées sur la néphrologie et pouvant nécessiter des commentaires canadiens, (2) lignes directrices canadiennes non spécifiquement liées à la néphrologie et pouvant nécessiter des commentaires de la SCN, (3) nouveaux sujets pour l’élaboration de lignes directrices. Les participants s’engageront dans une enquête Delphi modifiée à plusieurs tours afin de hiérarchiser un ensemble de « sujets importants pour l’élaboration de lignes directrices ».
UNASSIGNED: Un consensus sera atteint pour un énoncé s’il atteint à la fois un score médian (≥7) sur l’échelle de Likert et le pourcentage d’accord établi (≥ 75 %); le processus Delphi sera terminé lorsque le consensus sera atteint pour chaque énoncé. Les sujets pour l’élaboration de lignes directrices recevront ensuite une cote de priorité calculée à partir du total des scores des participants sur l’échelle Likert et ajustée en fonction du nombre de participants.
UNASSIGNED: L’étude pourrait être limitée par le taux de réponse des participants et leur engagement à compléter toutes les étapes de l’enquête.
UNASSIGNED: Nous proposons d’intégrer des exercices de définition des priorités fondés sur des données probantes et impliquant la participation de personnes vivant avec une néphropathie et de leurs soignants afin de déterminer des sujets consensuels pour l’élaboration de lignes directrices et de guider les futures activités du CSN CPGC en lien avec ce processus.

Cytomegalovirus (CMV) infection during pregnancy may result in long-term health problems for children with congenital CMV (cCMV). Currently, no prevention or treatment interventions are approved by the Food and Drug Administration for a cCMV indication. Healthcare provider and public awareness is low, and formal clinical practice guidelines and local practice patterns vary. A pilot study of eight cCMV experts was performed using qualitative semi-structured interviews to better understand clinical practice guidelines and patterns in the United States. Results from participant interviews highlighted the need for better prenatal diagnostic techniques, broader neonatal screening opportunities, and more robust evidence supporting intervention strategies. Healthcare provider and public partnerships are essential for advancing cCMV guidelines and improving care delivery. Our results provide a preliminary knowledge base and framework for developing a consensus cCMV research agenda to address evidence gaps that limit the revision of clinical practice guidelines. The changes in clinical practice patterns that may arise as a result of further research have the potential to reduce risk during pregnancy and improve care for children with cCMV infection.

OBJECTIVE: To understand developers\' perception of patient (versions of) guidelines (PVGs), and identify challenges during the PVG development, with the aim to inform methodological guidance for future PVG development.
METHODS: We used a descriptive qualitative design. Semi-structured interviews were conducted virtually from December 2021 to April 2022, with a purposive sampling of 12 PVG developers from nine teams in China. Conventional and directed content analysis was used for data analysis.
RESULTS: The interviews identified PVG developers\' understanding of PVGs, their current practice experience, and the challenges of developing PVGs. Participants believed PVGs were a type of health education material for patients; therefore, it should be based on patient needs and be understandable and accessible. Participants suggested that PVGs could be translated/adapted from one or several clinical practice guidelines (CPG), or developed de novo (i.e., the creation of an entirely new PVG with its own set of research questions that are independent of existing CPGs). Participants perceived those existing methodological guidelines for PVG development might not provide clear instructions for PVGs developed from multiple CPGs and from de novo development. Challenges to PVG development include (1) a lack of standardized and native guidance on developing PVGs; (2) a lack of standardized guidance on patient engagement; (3) other challenges: no publicly known and trusted platform that could disseminate PVGs; concerns about the conflicting interests with health professionals.
CONCLUSIONS: Our study suggests clarifying the concept of PVG is the primary task to develop PVGs and carry out related research. There is a need to make PVG developers realize the roles of PVGs, especially in helping decision-making, to maximize the effect of PVG. It is necessary to develop native consensus-based guidance considering developers\' perspectives regarding PVGs.

Sick day medication guidance (SDMG) involves withholding or adjusting specific medications in the setting of acute illnesses that could contribute to complications such as hypotension, acute kidney injury (AKI), or hypoglycemia. We sought to achieve consensus among clinical experts on recommendations for SDMG that could be studied in future intervention studies.
A modified Delphi process following guidelines for conducting and reporting Delphi studies.
An international group of clinicians with expertise relevant to SDMG was recruited through purposive and snowball sampling. A scoping review of the literature was presented, followed by 3 sequential rounds of development, refinement, and voting on recommendations. Meetings were held virtually and structured to allow the participants to provide their input and rapidly prioritize and refine ideas.
Opinions of participants were measured as the percentage who agreed with each recommendation, whereas consensus was defined as >75% agreement.
Quantitative data were summarized using counts and percentages. A qualitative content analysis was performed to capture the context of the discussion around recommendations and any additional considerations brought forward by participants.
The final panel included 26 clinician participants from 4 countries and 10 clinical disciplines. Participants reached a consensus on 42 specific recommendations: 5 regarding the signs and symptoms accompanying volume depletion that should trigger SDMG; 6 regarding signs that should prompt urgent contact with a health care provider (including a reduced level of consciousness, severe vomiting, low blood pressure, presence of ketones, tachycardia, and fever); and 14 related to scenarios and strategies for patient self-management (including frequent glucose monitoring, checking ketones, fluid intake, and consumption of food to prevent hypoglycemia). There was consensus that renin-angiotensin system inhibitors, diuretics, nonsteroidal anti-inflammatory drugs, sodium/glucose cotransporter 2 inhibitors, and metformin should be temporarily stopped. Participants recommended that insulin, sulfonylureas, and meglitinides be held only if blood glucose was low and that basal and bolus insulin be increased by 10%-20% if blood glucose was elevated. There was consensus on 6 recommendations related to the resumption of medications within 24-48 hours of the resolution of symptoms and the presence of normal patterns of eating and drinking.
Participants were from high-income countries, predominantly Canada. Findings may not be generalizable to implementation in other settings.
A multidisciplinary panel of clinicians reached a consensus on recommendations for SDMG in the presence of signs and symptoms of volume depletion, as well as self-management strategies and medication instructions in this setting. These recommendations may inform the design of future trials of SDMG strategies.

To review current practices and methods underlying the development of patient versions of guidelines (PVGs) in Chinese mainland.
We systematically searched for PVGs created or published between January 2010 and February 2022. We conducted a framework analysis for the development process and assessed the compliance of PVGs using the Reporting Checklist for Public Versions of Guidelines (RIGHT-PVG).
We identified 26 PVGs developed by 16 PVG-working teams. In accordance with the Guidelines International Network (GIN), only two PVGs were translated using one clinical practice guideline (CPG) provided by the CPG-working group source. Several CPGs and other information sources were integrated and translated into a single PVG by other PVG teams. Moreover, we identified various practices described by different PVG teams that could be structured into six steps. Out of the 17 RIGHT-PVG items, five items were fully reported in all PVGs, while two items (\"Provide a summary of the PVG\" and \"Provide a list of terms and abbreviations\") were not reported in any of the PVGs.
A relatively small number of PVGs were developed in Chinese mainland. The development of a PVG requires comprehensive methodological guidance based on several CPGs and other sources of information as opposed to only using one.

The Joint ISPOR-ISPE Special Task Force on Real-World Evidence included patient/stakeholder engagement as a recommended good procedural practice when designing, conducting, and disseminating real-world evidence (RWE). However, there are no guidelines describing how patient experience data (PED) can be applied when designing real-world data (RWD) studies. This article describes development of consensus recommendations to guide researchers in applying PED to develop patient-centered RWE.
A multidisciplinary advisory board, identified through recommendations of collaborators, was established to guide development of recommendations. Semistructured interviews were conducted to identify how experienced RWD researchers (n = 15) would apply PED when designing a hypothetical RWD study. Transcripts were analyzed and emerging themes developed into preliminary methods recommendations. An eDelphi survey (n = 26) was conducted to refine/develop consensus on the draft recommendations.
We identified 13 recommendations for incorporating PED throughout the design, conduct, and translation of RWE. The recommendations encompass themes related to the development of a patient-centered research question, designing a study, disseminating RWE, and general considerations. For example, consider how patient input can inform population/subgroups, comparators, and study period. Researchers can leverage existing information describing PED and may be able to apply those insights to studies relying on traditional RWD sources and/or patient registries.
Applying these emerging recommendations may improve the patient centricity of RWE through improved relevance of RWE to patient communities of interest and foster greater multidisciplinary participation and transparency in RWD research. As researchers gather experience by applying the methods recommendations, further refinement of these consensus recommendations may lead to \"best practices.\"

BACKGROUND: Inflammatory bowel diseases (IBD) are remitting and relapsing diseases that mainly interest the gastrointestinal tract. IBD is associated with a condition of psycho-social discomfort that deeply compromises the quality of life and the competence of patient to be fully engaged in their self-management. As a consequence, effective care of IBD patients should include not only medical but also psychological support in order to improve patients\' wellbeing. Although this, to date there is no standardized approach to promote psychological wellbeing of IBD patients in order to improve the perception of the quality of the care. To fill this gap, a consensus conference has been organized in order to define the psychosocial needs of IBD patients and to promote their engagement in daily clinical practice. This paper describes the process implemented and illustrates the recommendations deriving from it, which focus on the importance of a multidisciplinary approach in IBD management.
RESULTS: The consensus conference has been organized in three phases: (1) literature review about life experiences, engagement, and psychosocial needs of IBD patients; (2) workshops with IBD experts and patients\' representatives; (3) drafting of statements and voting. Seventy-three participants were involved in the consensus conference, and sixteen statements have been voted and approved during the consensus process.
CONCLUSIONS: The main conclusion is the necessity of the early detection of - and, in case of need, intervention on- psycho-social needs of patients in order to achieve patient involvement in IBD care.