RESUMO
Background: 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. Objective: 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. Study design: Protocol for a Modified Delphi Survey. Setting: Pilot-tested surveys will be distributed via email and conducted using the online platform SurveyMonkey, in both French and English. Participants: 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. Methods: 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." Measures: 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. Limitations: Potential limitations include participant response rates and compliance to survey completion. Conclusions: 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.
Contexte: 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. Objectif: 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. Conception: Protocole pour une enquête Delphi modifiée. Cadre: Des sondages pilotes, en anglais et en français, seront distribués par courriel et réalisés à l'aide de la plateforme en ligne SurveyMonkey. Participants: Nous créerons un groupe d'intervenants multidisciplinaires canadiens Åuvrant 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. Méthodologie: 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 ¼. Mesures: 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. Limites: L'étude pourrait être limitée par le taux de réponse des participants et leur engagement à compléter toutes les étapes de l'enquête. Conclusion: 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.
RESUMO
BACKGROUND: Peer support can address the informational and emotional needs of people living with chronic kidney disease (CKD) and enable self-management. We aimed to identify preferences and priorities for content, format and processes of peer support delivery for patients with non-dialysis CKD and their loved ones. METHODS: Using a patient-oriented research approach, we conducted a half-day, virtual consensus workshop with stakeholder participants from across Canada, including patients, caregivers, peer mentors and clinicians. Using personas (fictional characters), participants discussed and voted on preferences for delivery of peer support across format, content and process categories. We analyzed transcripts from small- and large-group discussions inductively using content analysis. RESULTS: Twenty-one stakeholders, including 9 patients and 4 caregivers, participated in the workshop. In the voting exercise on format, participants prioritized peer mentor matching, programming for both patients and caregivers, and flexible scheduling. For content, participants prioritized informational and emotional support focus, and for process, they prioritized leveraging kidney care programs and alternative sources (e.g., social media) for promotion and referral. Analysis of workshop transcripts complemented prioritization results and emphasized tailoring of peer support delivery to accommodate the diversity of people living with CKD and their support needs. This concept was elaborated in 3 themes, namely alignment of program features with needs, inclusive peer support options and multiple access points. INTERPRETATION: We identified preferences for peer support delivery for people living with CKD and underscore the importance of tailored, flexible programming in this context. Findings could be used to develop, adapt or study CKD-focused peer support interventions.
RESUMO
BACKGROUND: Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients' perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients' and clinicians' perspectives on the role of PROMs in supporting interdisciplinary symptom management. METHODS: We employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion. RESULTS: Thirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms ("You need a team", conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence). CONCLUSIONS: We found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.
People with kidney failure receiving hemodialysis are faced with complex symptoms that impact their day-to-day functioning and quality of life. Patient-reported outcome measures (PROMs) are tools used by patients to directly communicate symptoms to their care team and guide symptom-focused care. Little is known about how PROMs could be integrated into the team-based care models of outpatient hemodialysis centres. In this study, we conducted interviews with people receiving hemodialysis and their clinicians about their perspectives on how PROMs could support interdisciplinary symptom management (i.e., integration of expertise to achieve common management goals). Participants described how the interrelatedness of symptoms was well suited to an integrated care approach and how PROMs enhanced communication and access to information across team members. In cases where symptoms persisted despite appropriate treatment, patients and clinicians explained how PROMs served as a tool to set realistic goals and reshape illness perception. Findings from this study suggest that access to resources, role flexibility, and established relationships within hemodialysis centres are important for sustaining PROM use in this setting.
