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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.

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Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of improving the healthcare system. However, as a growing number of patient partners are asked to 'share their story' within health care and research settings, there is often not enough tools and resources to support them in preparing their stories in a way that will be impactful for the audience members. Our kidney research network sought to create a novel in-person storytelling program to address this gap within our health research context. The result is a 6-week program called Storytelling for Impact, which guides patient partners­which includes patients, family members, caregivers and organ donors­in developing impactful stories and sharing them in a formal setting. The program is led by story coaches, who are patient partners and staff with trained storytelling experience. Participants are encouraged to include a call to action in their story, which aims to outline clear ways in which health professionals can facilitate positive change in health research or care. Many participants have described the program as transformational, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As a result, we have also created a second online program that can be used by other interested parties outside our network. This paper highlights the adaptation process, content, participant feedback and next steps for the program.

RESUMO

BACKGROUND: There is limited research of electronic tools for self-management for patients with chronic kidney disease (CKD). We sought to evaluate participant engagement, perceived self-efficacy and website usage in a preliminary evaluation of My Kidneys My Health, a patient-facing eHealth tool in Canada. METHODS: We conducted an explanatory sequential mixed-methods study of adults with CKD who were not on kidney replacement therapy and who had access to My Kidneys My Health for 8 weeks. Outcomes included acceptance (measured by the Technology Acceptance Model), self-efficacy (measured by the Chronic Disease Self-Efficacy Scale [CDSES]) and website usage patterns (captured using Google Analytics). We analyzed participant interviews using qualitative content analysis. RESULTS: Twenty-nine participants with CKD completed baseline questionnaires, of whom 22 completed end-of-study questionnaires; data saturation was achieved with 15 telephone interviews. Acceptance was high, with more than 70% of participants agreeing or strongly agreeing that the website was easy to use and useful. Of the 22 who completed end-of-study questionnaires, 18 (82%) indicated they would recommend its use to others and 16 (73%) stated they would use the website in the future. Average scores for website satisfaction and look and feel were 7.7 (standard deviation [SD] 2.0) and 8.2 (SD 2.0) out of 10, respectively. The CDSES indicated that participants gained an increase in CKD information. Interviewed participants reported that the website offered valuable information and interactive tools for patients with early or newly diagnosed CKD, or for those experiencing changes in health status. Popular website pages and interactive features included Food and Diet, What is CKD, My Question List and the Depression Screener. INTERPRETATION: Participants indicated that the My Kidneys My Health website provided accessible content and tools that may improve self-efficacy and support in CKD self-management. Further evaluation of the website's effectiveness in supporting self-management among a larger, more heterogenous population is warranted.

Assuntos

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Although Chronic Kidney Disease is common, only a relatively small proportion of individuals will reach kidney failure requiring dialysis or transplantation. Validated risk equations using routine laboratory tests have been developed that can easily be used at the bedside to help clinicians accurately predict the risk of kidney failure in their patient population, in turn informing patient-centered conversations, guiding appropriate nephrology referrals, improving the timing of dialysis treatment planning, and identifying individuals who are most likely to benefit from interventions. In this article, individuals living with kidney disease share why access to individualized prediction of kidney failure risk can help patients manage their disease and why it should be considered an essential component of kidney care.

RESUMO

Background: Glomerulonephritis (GN) is a leading cause of kidney failure and accounts for 20% of incident cases of end-stage kidney disease (ESKD) in Canada annually. Reversal of kidney injury and prevention of progression to kidney failure is possible; however, limited knowledge of underlying disease mechanisms and lack of noninvasive biomarkers and therapeutic targets are major barriers to successful therapeutic intervention. Multicenter approaches that link longitudinal clinical and outcomes data with serial biologic specimen collection would help bridge this gap. Objective: To establish a national, patient-centered, multidimensional web-based clinical database and federated virtual biobank to conduct human-based molecular and clinical research in GN in Canada. Design: Multicenter, prospective observational registry, starting in 2019. Setting: Nine participating Canadian tertiary care centers. Patients: Adult patients with a histopathologic pattern of injury consistent with IgA nephropathy, focal and segmental glomerulosclerosis, minimal change disease, membranous nephropathy, C3 glomerulopathy, and membranoproliferative GN recruited within 24 months of biopsy. Measurements: Initial visits include detailed clinical, histopathological, and laboratory data collection, blood, urine, and tonsil swab biospecimen collection, and a self-administered quality of life questionnaire. Follow-up clinical and laboratory data collection, biospecimen collection, and questionnaires are obtained every 6 months thereafter. Methods: Patients receive care as defined by their physician, with study visits scheduled every 6 months. Patients are followed until death, dialysis, transplantation, or withdrawal from the study. Key outcomes include a composite of ESKD or a 40% decline in estimated glomerular filtration rate (eGFR) at 2 years, rate of kidney function decline, and remission of proteinuria. Clinical and molecular phenotypical data will be analyzed by GN subtype to identify disease predictors and discover therapeutic targets. Limitations: Given the relative rarity of individual glomerular diseases, one of the major challenges is patient recruitment. Initial registry studies may be underpowered to detect small differences in clinically meaningful outcomes such as ESKD or death due to small sample sizes and short duration of follow-up in the initial 2-year phase of the study. Conclusions: The Canadian Glomerulonephritis Registry (CGNR) supports national collaborative efforts to study glomerular disease patients and their outcomes. Trial registration: NCT03460054.

Contexte: Les glomérulonéphrites (GN) sont des causes importantes d'insuffisance rénale; elles représentent 20 % des cas incidents d'insuffisance rénale terminale (IRT) au Canada chaque année. Inverser la néphropathie et prévenir la progression vers l'insuffisance rénale est possible, mais deux obstacles majeurs freinent la réussite de l'intervention thérapeutique: une compréhension limitée des mécanismes sous-jacents de la maladie, de même que l'absence de biomarqueurs non invasifs et de cibles thérapeutiques. Les approches multicentriques reliant les données cliniques longitudinales et les résultats de santé à la collecte d'échantillons biologiques en série permettraient de combler cette lacune. Objectif: Créer une base de données cliniques nationale en ligne, multidimensionnelle et axée sur le patient, de même qu'une biobanque virtuelle fédérée pour permettre de mener des recherches moléculaires et cliniques humaines sur les GN au Canada. Type d'étude: Registre d'observation prospectif multicentrique débuté en 2019. Cadre: Neuf centres de soins tertiaires canadiens. Sujets: Des patients adultes recrutés dans les 24 mois suivant la biopsie et présentant un profil histopathologique de lésion compatible avec une néphropathie à IgA, une hyalinose segmentaire et focale, une maladie à changement minime, une glomérulonéphrite extra-membraneuse, une glomérulopathie à C3 et une glomérulonéphrite membranoproliférative. Mesures: La première visite comporte une collecte détaillée des données cliniques, histopathologiques et de laboratoire, la collecte d'échantillons biologiques (sang, urine et écouvillonnage des amygdales), ainsi qu'un questionnaire autoadministré sur la qualité de vie. Pour le suivi, la collecte des données cliniques et de laboratoire, la collecte des échantillons biologiques et les questionnaires s'effectuent tous les six mois. Méthodologie: Les patients reçoivent des soins comme établi par leur médecin, et les visites d'étude sont programmées tous les six mois. Les patients sont suivis jusqu'au décès ou jusqu'à la dialyse, à la transplantation ou au retrait de l'étude. Un critère de jugement combiné (IRT, ou diminution de 40 % du débit de filtration glomérulaire estimé après deux ans), ainsi que le taux de déclin de la fonction rénale et la rémission de la protéinurie sont les principaux critères de jugement. Les données phénotypiques cliniques et moléculaires seront analysées par sous-types de GN afin d'identifier les prédicteurs de la maladie et de découvrir de nouvelles cibles thérapeutiques. Limites: Le recrutement des sujets demeure un des principaux défis puisque les maladies glomérulaires prises individuellement sont relativement rares. La faible taille des échantillons et la courte durée du suivi pendant les deux ans de la phase initiale de l'étude pourraient faire en sorte que les études initiales issues du registre ne soient pas assez puissantes pour détecter de légères différences dans les résultats cliniquement significatifs comme l'IRT ou le décès. Conclusion: Le Canadian Glomerulonephritis Registry (CGNR) appuie les efforts de collaboration nationale visant à étudier les patients atteints de maladies glomérulaires et leur évolution clinique. Enregistrement de l'essai: NCT03460054.

RESUMO

Self-management in chronic kidney disease (CKD) can slow disease progression; however, there are few tools available to support patients with early CKD. My Kidneys My Health is a patient-focused electronic health (eHealth) self-management tool developed by patients and caregivers. This study will investigate the implementation of My Kidneys My Health across primary care and general nephrology clinics. The study aims to: (1) identify and address barriers and facilitators that may impact implementation and sustainability of the website into routine clinical care; (2) evaluate implementation quality to inform spread and scale-up. We will conduct a multi-stage approach using qualitative methods, guided by the Quality Implementation Framework and using a qualitative content analysis approach. First, we will identify perceived barriers and facilitators to implementation and considerations for sustainability through interviews with clinicians, based on the Readiness Thinking Tool and the Long Term Success Tool. Analysis will be guided by the Consolidated Framework for Implementation Research and the Theoretical Domains Framework. Appropriate implementation strategies will be identified using the Expert Recommendations for Implementing Change compilation, and implementation plans will be developed based on Proctor's recommendations and the Action, Actor, Context, Target, Time framework. Finally, we will explore implementation quality guided by the RE-AIM framework. There is limited literature describing systematic approaches to implementing and sustaining patient-focused self-management tools into clinical care, in addition to employing tailored implementation strategies to promote adoption and sustainability. We aim to generate insights on how My Kidneys My Health can be integrated into clinical care and how to sustain use of patient-centric eHealth tools in clinical settings on a larger scale. Supplementary Information: The online version contains supplementary material available at 10.1007/s43477-022-00038-3.

RESUMO

PURPOSE OF PROGRAM: Given the growing interest in patient-oriented research (POR) initiatives, there is a need to provide relevant training and education on how to engage with patients as partners on research teams. SOURCES OF INFORMATION: As part of its mandate to develop appropriate training materials, the patient-oriented renal research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), established a training and Mentorship Committee (TMC). METHODS: The committee brings together a unique combination of Indigenous and non-Indigenous patient partners (including caregivers, family members, and living donors), researchers, as well as patient engagement and knowledge translation experts, combining a multitude of perspectives and expertise. Following an assessment of training needs within the network, the TMC undertook the co-development of 5 learning modules to address the identified gaps. Subsequently, the committee divided into working groups tasked with developing content using a consultive and iterative approach informed by the DoTTI framework for building web-based tools for patients. In addition, the TMC embodied the guiding principles of inclusiveness, support, mutual respect, and co-building as set out by the Patient Engagement Framework through the Strategy for Patient-Oriented Research (SPOR) of the Canadian Institutes of Health Research. KEY FINDINGS: The 5 new modules include: A Patient Engagement Toolkit, Storytelling for Impact, Promoting Kidney Research in Canada (KidneyPRO), Wabishki Bizhiko Skaanj Learning Pathway, and Knowledge Translation. The TMC's approach to developing these modules demonstrates how a diverse group of stakeholders working together can create tools to support high-quality POR. This also provides a roadmap for other health research entities interested in developing similar tools within their unique domains. LIMITATIONS: The landscape of patient engagement in research is constantly evolving. This underscores the need for sustained resources to keep POR tools and training relevant and up-to-date. Sustaining such resources may not be feasible for all research entities. IMPLICATIONS: Collaborative approaches integrating patients in the development of POR tools ensure the content is relevant and meaningful to patients. Broader adoption of such approaches has great potential to address existing gaps and enhance the Canadian POR landscape.

OBJECTIF DU PROGRAM: L'intérêt croissant pour les initiatives de recherche axée sur le patient met en évidence le besoin de sensibiliser les chercheurs et d'offrir une formation pertinente sur les façons d'impliquer les patients comme partenaires dans les équipes de recherche. SOURCES: Dans le cadre de son mandat consistant à élaborer des documents de formation appropriés, le réseau dédié à l'avancement de la recherche en santé rénale axée sur le patient, le réseau CAN-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease), a créé un Comité de formation et de mentorat (CFM). MÉTHODOLOGIE: Le CFM réunit une combinaison unique de patients partenaires autochtones et non autochtones (incluant soignants, membres des familles, donneurs vivants), des chercheurs et des experts de l'application des connaissances et de l'implication des patients à la recherche, ce qui permet de conjuguer une multitude de points de vue et d'expertises. Après une évaluation des besoins en formation dans le réseau, le CFM a entrepris l'élaboration conjointe de cinq modules d'apprentissage pour combler les lacunes mises en évidence. Le comité s'est ensuite divisé en groupes de travail chargés d'en élaborer les contenus par le biais d'une approche consultative et itérative guidée par le cadre de perfectionnement DoTTI pour la création d'outils Web destinés aux patients. De plus, le CFM a intégré les principes directeurs d'inclusion, de soutien, de respect mutuel et de co-création énoncés dans le Cadre d'engagement des patients de la stratégie de recherche axée sur le patient (RAP) des Instituts de recherche en santé du Canada. PRINCIPAUX RÉSULTATS: Les cinq nouveaux modules sont: une trousse d'outils sur l'implication des patients, le partage de récits qui ont un impact, la promotion de la recherche dans le domaine rénal au Canada (KidneyPRO -Promoting Kidney Research in Canada), le cheminement d'apprentissage Wabishki Bizhiko Skaanj et l'application des connaissances. L'approche adoptée par le CFM pour développer ces modules a montré comment un groupe diversifié d'intervenants qui travaille ensemble peut mener à la création d'outils pour soutenir une RAP d'excellente qualité. Ces travaux ont également fourni une feuille de route pour d'autres entités de recherche en santé qui souhaiteraient élaborer des outils similaires dans leurs domaines respectifs. LIMITES: L'implication des patients dans la recherche est en constante évolution. Cette étude souligne le besoin de ressources durables pour garder les outils et les formations en RAP pertinents et à jour. Le maintien de telles ressources pourrait ne pas être possible pour toutes les entités de recherche. IMPLICATIONS: Les approches collaboratives qui impliquent les patients dans le développement d'outils de RAP garantissent que les contenus soient pertinents et significatifs pour les patients. L'adoption à plus grande échelle de telles approches a le potentiel de combler les lacunes existantes et d'améliorer le domaine de la RAP au Canada.

RESUMO

BACKGROUND: Self-management focused interventions to slow chronic kidney disease (CKD) progression are increasingly common. However, valid self-report instruments to evaluate the effectiveness of self-management interventions in CKD are limited. OBJECTIVE: We sought to develop and conduct preliminary psychometric testing of a patient-informed questionnaire to assess aspects of CKD self-management for patients with CKD categories G2-G5 (not on kidney replacement therapy [KRT]). DESIGN: Self-administered electronic questionnaires (multiphase). SETTING: Online. SAMPLE: Canadian adults with CKD categories G2-G5 (not on KRT). METHODS: The CKD-SM questionnaire was developed and tested in 4 phases. First, we used a content coverage matrix to identify potential questionnaire items based on existing self-efficacy questionnaires, self-management theories, and patient-identified priorities. Second, the draft questionnaire was reviewed by a multidisciplinary expert panel using percent acceptance to finalize the questionnaire. Third, we tested an electronic version of the questionnaire with patients with CKD, evaluating preliminary psychometric properties including internal consistency, face validity, and content validity. Finally, we tested the questionnaire within a CKD self-management intervention study and collected data on internal consistency, test-retest reliability, and pre-post responsiveness. RESULTS: We identified 22 potential questionnaire items for the first round of expert panel review. Thirteen items were retained in the first round. Eleven additional items were tested in the second review round and all were retained. Of the 24 items retained following expert review of the questionnaire, 21 had greater than 85% acceptance (content validity index [CVI], 0.75-1.00) and 3 items had 75% acceptance (CVI, 0.5). Thirty patients with CKD from across Canada participated in the pilot testing, and 29 patients participated in the CKD self-management intervention study. In the pilot test, several participants requested inclusion of a question that explicitly addressed mental health; consequently, an additional item relating to mental health was included prior to the intervention study (final questionnaire total was 25 items). Internal consistency (Cronbach α) was high for both the pilot (0.921) and intervention study (0.912). Preintervention test-retest reliability, measured with intraclass correlation coefficient, was acceptable (0.732, 95% confidence interval, 0.686-0.771, P < .001), and paired pre/postintervention comparison, measured with Wilcoxon sign-rank, demonstrated significant increases in self-management (P < .05) despite stable preintervention test-retest responses. Participants were satisfied with the content, wording, and design. LIMITATIONS: The sample sizes were small for each component of the analysis, and the sampling was consecutive/convenience-based. CONCLUSIONS: We used self-management theories, patient-identified self-management needs, expert review, and conducted preliminary psychometric testing to finalize a CKD self-management questionnaire for patients with G2-G5 CKD (not on KRT). The finalized questionnaire assesses aspects of self-management for individuals with CKD and may be particularly helpful as a tool to evaluate self-management interventions among patients with CKD.

CONTEXTE: Les interventions focalisées sur la prise en charge par le patient qui visent à ralentir la progression de l'insuffisance rénale chronique (IRC) sont de plus en plus courantes. Il existe cependant peu d'outils d'autodéclaration validés pour évaluer l'efficacité de ces interventions en contexte d'IRC. OBJECTIFS: Nous souhaitions élaborer un questionnaire destiné aux patients pour évaluer les aspects de la prise en charge de la néphropathie chronique par les patients atteints d'IRC de stade G2-G5 (ne suivant aucune thérapie de remplacement rénal [TRR]), puis réaliser des tests psychométriques préliminaires. CONCEPTION: Questionnaires électroniques autoadministrés (multiphases). CADRE: En ligne. ÉCHANTILLON: Des Canadiens adultes atteints d'IRC de grade G2-G5 (ne suivant aucune TRR). MÉTHODOLOGIE: Le questionnaire CKD-SM a été développé et testé en quatre phases : 1) une matrice de couverture de contenu a été utilisée pour déterminer les possibles éléments du questionnaire à partir des questionnaires d'auto-efficacité existants, des théories de prise en charge par le patient et des priorités identifiées par le patient; 2) le questionnaire préliminaire a été examiné par un groupe d'experts multidisciplinaire et finalisé avec le pourcentage d'acceptation; 3) une version électronique du questionnaire a été testée auprès de patients atteints d'IRC, pour en évaluer les propriétés psychométriques préliminaires, notamment la cohérence interne et la validité de la forme et du contenu, et enfin; 4) le questionnaire a été testé dans le cadre d'une étude portant sur les interventions par le patient en IRC et recueillant des données sur la cohérence interne, la fiabilité test-retest et la réactivité avant et après le test. RÉSULTATS: Nous avons défini 22 questions potentielles lors du premier tour de révision par le groupe d'experts. Treize questions ont été retenues au premier tour; onze questions supplémentaires ont été testées lors de la deuxième révision, et toutes ont été adoptées. Parmi les 24 questions retenues après révision du questionnaire par les experts, 21 présentaient une acceptation supérieure à 85 % (ratio de validité du contenu [RVC] : 0,75-1,00), contre 75 % pour les trois autres (RVC 0,5). Trente patients atteints d'IRC de partout au Canada ont participé à l'essai pilote tandis que 29 ont participé à l'étude d'intervention initiées par le patient en IRC. Pendant l'essai pilote, plusieurs participants ont demandé l'inclusion d'une question traitant explicitement de santé mentale; une question supplémentaire relative à la santé mentale a donc été incluse avant l'étude d'intervention (le questionnaire final comportait 25 questions). La cohérence interne (alpha de Cronbach) était élevée tant pour le pilote (0,921) que pour l'étude d'intervention (0,912). La fiabilité du test-retest préintervention, mesurée avec le coefficient de corrélation intra-classe, s'est avérée acceptable (0,732; IC : 0,686-0,771; p=<0,001) et la comparaison préintervention/post-intervention en paire, mesurée avec le test de rang de Wilcoxon, a montré une augmentation significative des interventions initiées par le patient (p<0,05) malgré des réponses stables au test-retest préintervention. Les participants se sont dits satisfaits du contenu, du libellé et de la conception de l'étude. LIMITES: Les échantillons pour chaque composante de l'analyse étaient faibles et l'échantillonnage était consécutif/basé sur la commodité. CONCLUSION: Nous avons utilisé des théories de prise en charge par le patient, les besoins identifiés par les patients, une revue par des experts et effectué des tests psychométriques préliminaires pour finaliser un questionnaire de prise en charge initiée par le patient de l'IRC (CKD-SM) pour les patients atteints d'IRC de stade G2-G5 (sans TRR). Le questionnaire finalisé évalue les aspects de l'autogestion chez les personnes atteintes d'IRC et peut être particulièrement utile comme outil d'évaluation de ces interventions chez ces patients.

RESUMO

BACKGROUND: Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those who care for them. Self-management has been shown to slow CKD progression and improve the quality of life of individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed, web-based tool for CKD self-management that can be individualized to a patient's unique situation, priorities, and preferences. We addressed this gap using an integrated knowledge translation method and patient engagement principles. OBJECTIVE: The aim of this study is to conduct systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (nondialysis and nontransplant) and their caregivers to enhance self-management support. METHODS: A multistep, iterative system development cycle was used to co-design and test the My Kidneys My Health prototype. The 3-step process included creating website features and content using 2 sequential focus groups with patients with CKD and caregivers, heuristic testing using the 10 heuristic principles by Nielsen, and usability testing through in-person 60-minute interviews with patients with CKD and their caregivers. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. RESULTS: In step 1, 18 participants (14 patients and 4 caregivers) attended one of the 2 sequential focus groups. The participants provided specific suggestions for simplifying navigation as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. A total of 5 reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Furthermore, 5 participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean system usability score of 90 out of 100. CONCLUSIONS: The My Kidneys My Health prototype is a systematically developed, multifaceted, web-based CKD self-management support tool guided by the theory and preferences of patients with CKD and their caregivers. The website is user friendly and provides features that improve user experience by tailoring the content and resources to their needs. A feasibility study will provide insights into the acceptability of and engagement with the prototype and identify preliminary patient-reported outcomes (eg, self-efficacy) as well as potential factors related to implementation. This work is relevant given the shift to virtual care during the current pandemic times and provides patients with support when in-person care is restricted.

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PURPOSE OF REPORT: Over the recent years, there has been increasing support and traction for patient-oriented research (POR). Such an approach ensures that health research is focused on what matters most: improving outcomes for patients. Yet the realm of health research remains enigmatic for many patients in Canada who are not familiar with research terms and practices, highlighting the need for focused capacity-building efforts, including the development of novel educational tools to support patients to meaningfully engage in the research enterprise. The need for disease-specific training in POR was identified by the network dedicated to advancing patient-oriented kidney research in Canada, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), during the early years of the network's inception. In this report, we describe the development of KidneyPRO, an online learning module that orients patients and families to kidney research in Canada, and outlines ways to get involved. In line with the Patient Engagement framework of the Strategy for Patient Oriented Research, KidneyPRO was co-developed with the network's patient partners. SOURCES OF INFORMATION: The need for KidneyPRO was identified through a review of feedback from network participants of Canadian Institutes of Health Research's (CIHR) Foundations in Patient-Oriented Research Module 2-Health Research in Canada and a network-wide survey of Can-SOLVE CKD that was conducted in June 2017 and assessed training needs of key stakeholders. This 2017 survey ranked the need for tools providing introductory knowledge on Canadian kidney research as third in the network's top 5 capacity-building priorities. METHODS: At Can-SOLVE CKD, a dedicated multi-stakeholder team was formed from the Training & Mentorship Committee (the network's core infrastructure for POR capacity building) to determine the learning objectives, content, and user interface. The team consisted of 3 patient partners, Director of Research for the Kidney Foundation of Canada, a kidney clinician-scientist, the network's Patient Partnerships & Training Lead, Can-SOLVE CKD's Indigenous People's Engagement and Research Council Coordinator, and a project coordinator. With permission, content from CIHR's Foundations in Patient-Oriented Research, along with resources from the Kidney Foundation of Canada's research arm and network project teams, was used to form the basis of the tool. The working group adapted a DoTTI (Design and develOpment, Testing early iterations, Testing for Effectiveness, Integration, and implementation) framework and iteratively identified, created, and refined the content and user interface in consultation with the Training and Mentorship Committee and the Can-SOLVE CKD Patient Governance Circle. KEY FINDINGS: In this article, we describe the development, deployment, and evaluation of KidneyPRO, a web-based training module that helps patients understand general, patient-oriented, and kidney-specific research within Canada. KidneyPRO aims to support patient engagement in studies as partners and/or participants and empower them to take part in the research process in an active and meaningful way. It was co-designed and vetted by patients, which helps to ensure clear, useful content and a user-friendly interface. In addition, the module includes links to kidney research opportunities within the Can-SOLVE CKD Network and beyond. A literature review established that KidneyPRO fills an important gap in kidney-specific POR. Ongoing collection of website metrics and postcompletion surveys from users will be used to evaluate the effectiveness of the tool. LIMITATIONS: As an online tool, people who do not have adequate Internet access will not be able to use KidneyPRO. Currently, the tool is not compliant with all Web Content Accessibility Guidelines. Given how the landscape of patient partnership in research is constantly evolving, the content in KidneyPRO needs to be updated on a regular basis. IMPLICATIONS: Canadians with or at high risk of CKD now have access to an educational tool when seeking to engage as partners and/or participants in innovative kidney research.

OBJET DU RAPPORT: Depuis quelques années, la recherche axée sur le patient (RAP) bénéficie d'un soutien et d'un attrait croissant. Cette approche permet de garantir que la recherche se concentre sur ce qui compte vraiment: améliorer les résultats des patients. La recherche en santé demeure toutefois énigmatique pour les nombreux patients canadiens qui ne sont pas familiers avec la terminologie et les pratiques de la recherche. Ce constat met en évidence le besoin d'efforts ciblés pour renforcer les capacités, notamment en développant des outils éducatifs pour inciter les patients à s'impliquer significativement dans la recherche. Le besoin de formation spécifique aux maladies rénales dans la RAP a été identifié par Can-SOLVE CKD, le réseau dédié à l'avancement de la recherche en santé rénale axée sur le patient au Canada, dès les premières années de sa création. Dans ce rapport, nous discutons du développement de KidneyPRO, un module d'apprentissage en ligne qui oriente les patients et les familles vers la recherche en santé rénale au Canada et qui présente les différentes façons de s'impliquer. Conformément au Cadre d'engagement des patients de la Stratégie de recherche axée sur le patient, KidneyPRO a été élaboré avec la participation des patients-partenaires du réseau. SOURCES: Le besoin pour un outil comme KidneyPRO a été établi grâce à l'examen des commentaires des participants au module 2 des fondements de la recherche axée sur le patient des IRSC et d'un sondage évaluant les besoins de formation des principaux intervenants mené en juin 2017 dans l'ensemble du réseau Can-SOLVE CKD. Ce sondage a permis de classer le besoin d'outils fournissant des connaissances de base sur la recherche en santé rénale au Canada au troisième rang des cinq principales priorités du réseau en matière de renforcement des capacités. MÉTHODOLOGIE: Chez Can-SOLVE CKD, une équipe multipartite dédiée a été constituée au sein du comité de formation et de mentorat (la principale infrastructure du réseau en matière de renforcement des capacités dans la RAP) pour établir les objectifs d'apprentissage, le contenu et l'interface utilisateur de KidneyPRO. Cette équipe était constituée de trois patients-partenaires, du directeur de la recherche de la Fondation canadienne du rein, d'un chercheur clinicien en santé rénale, du responsable chez Can-SOLVE CKD de la formation et des partenariats avec les patients, du coordonnateur du Conseil de la recherche et de l'engagement des peuples autochtones (CREPC) de Can-SOLVE CKD, et d'un coordonnateur de projet. Avec les autorisations requises, le contenu des Fondations pour la recherche axée sur le patient des IRSC, de même que les ressources du bras de recherche de la Fondation canadienne du rein et des équipes de projet de Can-SOLVE CKD ont été utilisés pour constituer la base de l'outil. Le groupe de travail a adapté un cadre de perfectionnement DoTTI (Design and develOpment, Testing early iterations, Testing for Effectiveness, Integration and implementation) puis déterminé, créé et raffiné de manière itérative le contenu et l'interface utilisateur de l'outil en collaboration avec le Comité de formation et de mentorat et le Conseil des patients de Can-SOLVE CKD. PRINCIPAUX RÉSULTATS: Cet article décrit le développement, le déploiement et l'évaluation de KidneyPRO, un module d'apprentissage en ligne qui aide les patients canadiens à comprendre la recherche tant générale que centrée sur les patients ou spécifique aux maladies rénales. KidneyPRO est conçu pour soutenir l'engagement des patients en recherche, comme partenaires et/ou participants, et leur donner les moyens de s'impliquer activement et significativement dans le processus. L'outil a été co-créé et validé par les patients, ce qui contribue à garantir un contenu clair et pertinent, et une interface facile à utiliser. Le module comprend également des liens vers les différentes avenues de la recherche dans le réseau Can-SOLVE CKD et ailleurs. Une revue de la littérature a permis de confirmer que KidneyPRO comble un important vide de la RAP en santé rénale. L'efficacité de l'outil sera évaluée par la collecte de données en continu sur le site Web et par des questionnaires de suivi proposés aux patients. LIMITES: KidneyPRO étant un outil en ligne, son utilisation pourrait constituer un enjeu pour les personnes dont l'accès à internet est inadéquat. Aussi, l'outil n'est toujours pas conforme à toutes les directives pour l'accessibilité aux contenus Web. Enfin, la situation des partenariats avec les patients en recherche étant en constante évolution, le contenu de KidneyPRO doit être mis à jour régulièrement. CONCLUSION: Les Canadiens atteints ou susceptibles d'évoluer vers l'insuffisance rénale chronique ont désormais accès à un outil éducatif lorsqu'ils cherchent à s'impliquer comme partenaires ou participants à des études innovantes en santé rénale.

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BACKGROUND: Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. METHODS: A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. RESULTS: There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. INTERPRETATION: A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.

RESUMO

BACKGROUND: Although numerous websites for patients with chronic kidney disease (CKD) are available, little is known about their content and quality. OBJECTIVE: To evaluate the quality of CKD websites, and the degree to which they align with information needs identified by patients with CKD. METHODS: We identified websites by entering "chronic kidney disease" in 3 search engines: Google.com (with regional variants for Australia, Canada, the United Kingdom, and the United States), Bing.com, and Yahoo.com. We included the first 50 unique English-language sites from each search. We evaluated website content using a 30-point scale comprising 8 priority content domains identified by patients with CKD (understanding CKD, diet, symptoms, medications, mental/physical health, finances, travel, and work/school). We used standardized tools to evaluate usability, reliability, and readability (DISCERN, HONcode, LIDA, Reading Ease, and Reading Grade Level). Two reviewers independently conducted the search, screen, and evaluation. RESULTS: Of the 2093 websites identified, 115 were included. Overall, sites covered a mean (SD) of 29% (17.8) of the CKD content areas. The proportion of sites covering content related to understanding CKD, symptoms, and diet was highest (97%, 80%, and 72%, respectively). The proportion of sites covering travel, finances, and work/school content was lowest (22%, 12%, and 12%, respectively). The mean (SD) scores for DISCERN, LIDA and HONcode were 68% (14.6), 71% (14.4), and 75% (17.2), respectively, considered above average for usability and reliability. The mean (SD) Reading Grade Level was 10.6 (2.8) and Reading Ease was 49.8 (14.4), suggesting poor readability. CONCLUSIONS: Although many CKD web sites were of reasonable quality, their readability was poor. Furthermore, most sites covered less than 30% of the content patients identified as important for CKD self-management. These results will inform content gaps in internet-accessible information on CKD self-management that should be addressed by future eHealth web-based tools.

CONTEXTE: Bien qu'il existe de nombreux sites Web s'adressant aux patients atteints d'insuffisance rénale chronique (IRC), on en sait peu sur leur qualité et sur la pertinence de leur contenu. OBJECTIFS: Évaluer la qualité de sites Web traitant de l'IRC et vérifier s'ils sont en phase avec les besoins d'information formulés par les patients. MÉTHODOLOGIE: Nous avons répertorié des sites Web en entrant chronic kidney disease (insuffisance rénale chronique) dans trois moteurs de recherche, soit Google.com (et ses variantes régionales australienne, canadienne, britannique et étatsunienne), Bing.com et Yahoo.com. Ont été inclus les 50 premiers sites en anglais s'affichant sur chacun. Le contenu a été évalué avec une échelle en 30 points englobant huit domaines d'intérêt cités par les patients atteints d'IRC, soit Understanding CKD (comprendre l'IRC), Diet (régime alimentaire), Symptoms (symptômes), Medications (médicaments), Mental/Physical Health (santé physique/mentale), Finances (finances), Travel (voyage) et Work/School (travail/études). Des outils normalisés (DISCERN, HONcode, LIDA, Flesch Reading Ease, Flesch-Kincaid Reading Grade Level) ont été employés pour évaluer la convivialité, la fiabilité et la lisibilité des contenus. Deux examinateurs ont procédé à la recherche, au triage et à l'évaluation des sites de façon indépendante. RÉSULTATS: Des 2 093 sites répertoriés, 115 ont été inclus. Dans l'ensemble, ceux-ci couvraient les domaines d'intérêt à 29 % (17,8) en moyenne. La compréhension de l'IRC (97 %), les symptômes (80 %) et le régime alimentaire (72 %) se sont révélés les sujets abordés par une plus grande proportion des sites évalués. Les voyages (22 %), la situation financière (12 %) et le travail/les études (12 %) constituaient quant à eux les sujets les moins couverts. Les scores moyens pour DISCERN (68 % [14,6]), LIDA (71 % [14,4]) et HONcode (75 % [17,2]) se sont avérés au-dessus de la moyenne pour la convivialité et la fiabilité. Le score moyen au Reading Grade Level était de 10,6 (2,8) et celui du Reading Ease était de 49,8 (14,4), suggérant une faible lisibilité. CONCLUSION: Bien que la qualité de plusieurs sites Web traitant de l'IRC se soit révélée satisfaisante, leur lisibilité était faible. De plus, la plupart couvraient moins de 30 % du contenu jugé important par les patients dans l'autogestion de la maladie. Ces résultats mettront en lumière les lacunes de l'information accessible sur internet quant à l'autogestion de l'IRC; lacunes qui devraient être comblées par les futurs outils de santé en ligne.

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BACKGROUND: A risk-based model of care for managing patients with chronic kidney disease (CKD) using the Kidney Failure Risk Equation (KFRE) has been successfully integrated into nephrology care pathways in several jurisdictions. However, as most patients with CKD can be managed in primary care, the next pertinent steps would be to integrate the KFRE into primary care pathways. OBJECTIVE: Using a risk-based approach for guiding CKD care in the primary care setting, the objective of the study is to develop, implement, and evaluate tools that can be used by patients and providers. DESIGN: This study is a multicenter cluster randomized control trial. SETTING: Thirty-two primary care clinics belonging to the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) across Manitoba and Alberta. PATIENTS: All patients at least 18 years old or older with CKD categories G3-G5 attending the participating clinics; we estimate each clinic will have an average of 185 patients with CKD. METHODS: Thirty-two primary care clinics will be randomized to receive either an active knowledge translation intervention or no intervention. The intervention involves the addition of the KFRE and decision aids to clinics' Data Presentation Tool (DPT), as well as patient-facing visual aids, a medical detailing visit, and sentinel feedback reports. Control clinics will only be exposed to current guidelines for CKD management, without active dissemination. MEASUREMENTS: Data from the CPCSSN repository will be used to assess whether a risk-based care approach affected management of CKD. Primary outcomes are as follows: the proportion of patients with measured urine albumin-to-creatinine ratio, and the proportion of patients being appropriately treated with angiotensin-converting enzyme inhibitor or angiotensin receptor blockers. Secondary outcomes are as follows: the optimal management of diabetes (hemoglobin A1C <8.5%, and the use of sodium-glucose cotransporter-2 inhibitors in CKD G3 patients), hypertension (office blood pressure <130/80 for patients with diabetes, 140/90 for those without), and cardiovascular risk (statin prescription); prescriptions of nonsteroidal anti-inflammatory drugs; and decline in estimated glomerular filtration rate (eGFR). In addition, in a substudy, we will measure CKD-specific health literacy and trust in physician care via surveys administered in the clinic post-visit. At the provider level, we will measure satisfaction with the risk prediction tools. Lastly, at the health system level, outcomes include cost of CKD care, and appropriate referrals for patients at high risk of kidney failure based on provincial guidelines. Primary and secondary outcomes will be measured at the patient level and enumerated at the clinic level 1 year after the intervention implementation, except for decline in eGFR, which will be measured 2 years postintervention. LIMITATIONS: Limitations include scalability of the proposal in other health care systems. CONCLUSIONS: If successful, this intervention has the potential to improve the management of patients with CKD within Canadian primary care settings, leading to health and economic benefits, and influencing practice guidelines. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT03365063.

CONTEXTE: Un modèle de soins intégrant la prévision du risque d'évolution vers l'insuffisance rénale par la KFRE (Kidney Failure Risk Equation) a été incorporé avec succès aux protocoles de soins des patients atteints d'insuffisance rénale chronique (IRC) de plusieurs provinces. Comme la plupart des patients souffrant d'IRC peuvent être pris en charge en première ligne, l'étape suivante serait d'intégrer la KFRE aux protocoles de soins de première ligne. OBJECTIFS: Avec une approche intégrant la prévision des risques dans les soins en IRC, l'étude vise à élaborer, mettre en œuvre et évaluer les outils qui pourraient être utilisés par les patients et les fournisseurs de soins en contexte de soins de première ligne. TYPE D'ÉTUDE: Il s'agit d'un essai multicentrique, contrôlé et à répartition aléatoire en grappes. CADRE: L'étude se tiendra dans trente-deux cliniques de soins de première ligne du Manitoba et de l'Alberta faisant partie du Réseau canadien de surveillance sentinelle en soins primaires (RCSSSP). SUJETS: Tous les patients adultes atteints d'IRC de stades G3-G5 fréquentant les cliniques participantes. Nous estimons que chaque clinique fournira une moyenne de 185 patients à l'étude. MÉTHODOLOGIE: Les trente-deux cliniques seront réparties aléatoirement pour recevoir ou non une intervention active de transmission des connaissances. L'intervention comprendra l'ajout de la KFRE et d'outils d'aide à la décision à l'outil actuel de présentation des données de la clinique; de même que du support visuel pour les patients, une consultation médicale détaillée et des rapports de rétroaction sentinelle. Les cliniques contrôles, quant à elles, ne seront exposées qu'aux lignes directrices actuelles pour la prise en charge de l'IRC, sans diffusion active. MESURES: Les données du registre du RCSSSP seront employées pour évaluer l'impact de l'approche intégrant la prévision du risque sur la gestion de l'IRC. Les critères de jugement principaux seront la proportion de patients pour lesquels on aura une mesure du rapport albumine/créatinine urinaire (RAC) et la proportion de patients traités adéquatement avec un inhibiteur de l'enzyme de conversion de l'angiotensine ou d'antagonistes des récepteurs de l'angiotensine. Les critères de jugement secondaires incluront la gestion optimale du diabète (hémoglobine A1C < 8,5 %, et l'emploi d'inhibiteurs de SGLT2 chez les patients de stade G3), de l'hypertension (pression sanguine en cabinet à < 130/80 pour les diabétiques et à < 140/90 pour les non-diabétiques) et du risque de maladies cardiovasculaires (prescription de statines); ainsi que la prescription d'anti-inflammatoires non stéroïdiens et un déclin du débit de filtration glomérulaire estimé (DFGe). Parallèlement, dans une étude secondaire, nous examinerons les connaissances des patients sur l'IRC et leur confiance envers les soins médicaux par le biais de sondages menés à la clinique après la consultation. Nous mesurerons également la satisfaction des fournisseurs de soins à l'égard des outils de prévention du risque. Enfin, du point de vue du système de santé, nous examinerons les coûts associés aux soins en IRC et l'aiguillage adéquat des patients dont le risque d'évolution vers l'insuffisance rénale est jugé élevé selon les lignes directrices provinciales. Les critères de jugement primaires et secondaires seront mesurés du point de vue des patients et recensés à l'échelle de la clinique un an après la mise en œuvre de l'intervention, à l'exception du déclin du DFGe qui sera mesuré deux ans après l'intervention. LIMITES: Les limites de l'étude incluent notamment l'extensibilité de la proposition à d'autres systèmes de santé. CONCLUSIONS: Si elle réussit, cette intervention pourrait améliorer la prise en charge des patients atteints d'IRC dans les établissements canadiens de première ligne, et ainsi entraîner des retombées positives en matière de santé et d'économie en plus d'influencer les lignes directrices de pratique.

RESUMO

RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. STUDY DESIGN: Descriptive qualitative study using semi-structured interviews and focus groups. SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. ANALYTIC APPROACH: Thematic analysis. RESULTS: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). LIMITATIONS: Participants were primarily white, educated, married, and English speaking, which limits generalizability. CONCLUSIONS: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.

Assuntos