An eHealth self-management intervention for adults with chronic kidney disease, My Kidneys My Health: a mixed-methods study.

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.

A Research Protocol for Implementation and Evaluation of a Patient-Focused eHealth Intervention for Chronic Kidney Disease.

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.

Development and Preliminary Psychometric Testing of an Adult Chronic Kidney Disease Self-Management (CKD-SM) Questionnaire.

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.

A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease (My Kidneys My Health): Co-Design and Usability Testing.

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.

Exploring Undergraduate Nursing Students' Experiences of Engaging With a Dialectical Behavior Therapy-Skills Group Intervention: Findings of a Thematic Analysis.

STUDY BACKGROUND: Nursing students often have high levels of stress leading to negative consequences for academic performance and overall well-being. Novel strategies are needed to help students manage stress. PURPOSE: To explore students' experiences with an evidence-based intervention-Dialectical Behavior Therapy-Skills Group (DBT-SG). METHODS: We conducted a mixed-methods study to pilot test a DBT-SG intervention, modified for use with undergraduate nursing students. Qualitative data collected as part of this study included focus groups and written responses on a study questionnaire. Thematic analysis of these data was undertaken to explore how students experienced the intervention. The results of this analysis are reported here. RESULTS: Five themes were uncovered: experiencing stress and de-stressing, feeling accepted and validated, acquiring skills, shifting perspectives, and enhanced well-being. CONCLUSIONS: Our findings suggest that by engaging with DBT-SG, nursing students felt accepted and validated, acquired a variety of skills to cope with stress, as well as developed new perspectives, such as the value of practicing self-care, which contributed to enhanced well-being. Future research could build on these results by further exploring how to best create accepting and validating learning environments where students are encouraged to develop interpersonal relationship skills and enact self-care to further support their well-being and professional development.

Group-based storytelling in disease self-management among people with diabetes.

OBJECTIVE: We explored the underlying mechanisms by which storytelling can promote disease self-management among people with type 2 diabetes. METHODS: Two, eight-session storytelling interventions were delivered to a total of eight adults with type 2 diabetes at a community health center in Toronto, Ontario. Each week, participants shared stories about diabetes self-management topics of their choice. Using a qualitative descriptive approach, transcripts from each session and focus groups conducted during and following the intervention were coded and analyzed using NVivo software. Through content analysis, we identified categories that describe processes and benefits of the intervention that may contribute to and support diabetes self-management. RESULTS: Our analysis suggests that storytelling facilitates knowledge exchange, collaborative learning, reflection, and making meaning of one's disease. These processes, in turn, could potentially build a sense of community that facilitates peer support, empowerment, and active engagement in disease self-management. CONCLUSION: Venues that offer patients opportunities to speak of their illness management experiences are currently limited in our healthcare systems. In conjunction with traditional diabetes self-management education, storytelling can support several core aspects of diabetes self-management. Our findings could guide the design and/or evaluation of future story-based interventions.

Through the Lens of Chronic Kidney Disease: A Qualitative Study of the Experiences of Young Women Living With CKD.

BACKGROUND: Young women may be particularly vulnerable to the negative psychosocial consequences of living with chronic kidney disease (CKD). To date, little is known about how women themselves experience and manage their illness. OBJECTIVES: This study explored the experiences of young women living with CKD. DESIGN: Qualitative descriptive study. SETTING: Nephrology program in an urban setting in Ontario, Canada. PARTICIPANTS: Women with category G1-3 glomerular-based CKD between 18 and 40 years of age. METHODS: Focus group discussions guided by semi-structured interview questions. Qualitative content analysis was used to analyze interview transcripts. RESULTS: Eleven women participated in 3 separate focus group discussions. Participants described living life through the lens of CKD, which was the central theme unifying their experiences of encountering CKD, re-encountering CKD, and getting on with life. Life decisions significant to women like pursuing a career or motherhood were often colored by CKD, particularly by illness-related challenges, such as unsatisfactory health care support and the physical implications of chronic illness. The women used a variety of strategies including seeking information and relying on supportive people to mitigate these challenges. Although these strategies sometimes enabled them to balance the demands of illness with other life priorities, the lack of resources directed toward their unique needs as young women with CKD often caused them difficulties in managing their illness. LIMITATIONS: Participants were from one nephrology program in an urban setting and were well educated overall. Their experiences may not be reflective of young women in other settings or from diverse backgrounds. CONCLUSIONS: The women's emotional well-being and life choices were considerably influenced by CKD. Although the women were often able to manage challenges associated with CKD, they acknowledged the need to seek additional professional resources to complement their own self-identified strategies. As the women sought out these supports, they identified gaps in resources specific to women with CKD. This article summarizes recommendations from their perspective. TRIAL REGISTRATION: Not applicable as this was a qualitative study.

CONTEXTE: Les jeunes femmes seraient particulièrement vulnérables aux effets psychologiques négatifs de vivre avec l'insuffisance rénale chronique (IRC). À ce jour, on en sait peu sur l'expérience vécue par ces femmes et sur la façon dont elles gèrent la maladie. OBJECTIF: L'étude s'est penchée sur l'expérience de jeunes femmes vivant avec l'IRC. TYPE D'ÉTUDE: Étude qualitative et descriptive. CADRE: Le programme de néphrologie d'un centre urbain en Ontario (Canada). SUJETS: Des femmes âgées de 18 à 40 ans atteintes d'IRC glomerulaire de catégorie G1 à G3. MÉTHODOLOGIE: Discussions sous forme d'entretiens semi-structurés en groupes-échantillons et évaluation des transcriptions par l'analyse qualitative de contenu. RÉSULTATS: Les participantes (n=11) ont pris part à trois groupes de discussion distincts. Elles ont décrit leur expérience à travers le prisme de l'IRC, le thème principal des discussions, et discuté des premières manifestations de la maladie, des épisodes récurrents et de la poursuite de leur vie malgré la maladie. Les décisions de vie importantes, notamment la maternité et la poursuite d'une carrière, ont bien souvent été teintées par l'IRC et ses défis, en particulier par le manque de soutien en matière de soins de santé et par les conséquences physiques de vivre avec une maladie chronique. Des défis qu'elles ont tenté d'atténuer par diverses stratégies, notamment par la recherche d'information et d'appui de la part de personnes de confiance. Bien que ces stratégies leur ont permis à l'occasion de créer un équilibre entre les exigences de la maladie et les autres priorités de leur vie, le manque de ressources répondant à leurs besoins particuliers a rendu la gestion de la maladie plus difficile. LIMITES: Les participantes provenaient d'un seul programme de néphrologie en milieu urbain et étaient dans l'ensemble bien éduquées. L'expérience décrite pourrait ne pas refléter celle de jeunes femmes issues de milieux et de contextes différents. CONCLUSION: L'IRC a considérablement influencé les choix de vie et le bien-être psychologique des jeunes femmes questionnées. Bien qu'elles arrivent généralement à surmonter les défis liés à la maladie, les participantes, en cherchant des ressources pour appuyer leurs stratégies, ont constaté des lacunes dans les ressources professionnelles destinées spécifiquement aux jeunes femmes atteintes d'IRC. Cet article résume les recommandations de leur point de vue. ENREGISTREMENT DE L'ESSAI: Ne s'applique pas puisqu'il s'agit d'une étude qualitative.

Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop.

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.

Content and Quality of Websites for Patients With Chronic Kidney Disease: An Environmental Scan.

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.

Rituximab or Cyclosporine in the Treatment of Membranous Nephropathy.

BACKGROUND: B-cell anomalies play a role in the pathogenesis of membranous nephropathy. B-cell depletion with rituximab may therefore be noninferior to treatment with cyclosporine for inducing and maintaining a complete or partial remission of proteinuria in patients with this condition. METHODS: We randomly assigned patients who had membranous nephropathy, proteinuria of at least 5 g per 24 hours, and a quantified creatinine clearance of at least 40 ml per minute per 1.73 m2 of body-surface area and had been receiving angiotensin-system blockade for at least 3 months to receive intravenous rituximab (two infusions, 1000 mg each, administered 14 days apart; repeated at 6 months in case of partial response) or oral cyclosporine (starting at a dose of 3.5 mg per kilogram of body weight per day for 12 months). Patients were followed for 24 months. The primary outcome was a composite of complete or partial remission of proteinuria at 24 months. Laboratory variables and safety were also assessed. RESULTS: A total of 130 patients underwent randomization. At 12 months, 39 of 65 patients (60%) in the rituximab group and 34 of 65 (52%) in the cyclosporine group had a complete or partial remission (risk difference, 8 percentage points; 95% confidence interval [CI], -9 to 25; P = 0.004 for noninferiority). At 24 months, 39 patients (60%) in the rituximab group and 13 (20%) in the cyclosporine group had a complete or partial remission (risk difference, 40 percentage points; 95% CI, 25 to 55; P<0.001 for both noninferiority and superiority). Among patients in remission who tested positive for anti-phospholipase A2 receptor (PLA2R) antibodies, the decline in autoantibodies to anti-PLA2R was faster and of greater magnitude and duration in the rituximab group than in the cyclosporine group. Serious adverse events occurred in 11 patients (17%) in the rituximab group and in 20 (31%) in the cyclosporine group (P = 0.06). CONCLUSIONS: Rituximab was noninferior to cyclosporine in inducing complete or partial remission of proteinuria at 12 months and was superior in maintaining proteinuria remission up to 24 months. (Funded by Genentech and the Fulk Family Foundation; MENTOR ClinicalTrials.gov number, NCT01180036.).

Understanding Adults With Chronic Kidney Disease and Their Caregivers' Self-Management Experiences: A Qualitative Study Using the Theoretical Domains Framework.

BACKGROUND: Self-management support interventions are widely accepted in chronic kidney disease (CKD) care; however, interventions rarely consider individual behaviors by incorporating a behavioral theoretical framework. The Theoretical Domains Framework (TDF) can be used to facilitate an understanding of patients and their caregivers' behaviors to successfully self-manage CKD. OBJECTIVES: (1) To understand behaviors of patients with CKD and their caregivers and identify potential intervention approaches to support CKD self-management and (2) to explore relationships between the 14 TDF domains and CKD self-management. DESIGN: Qualitative descriptive study using both content and thematic analysis. SETTING: Purposive criterion was used to recruit participants from across Canada. PATIENTS: Canadian patients with CKD and their caregivers. MEASUREMENTS: Focus groups and telephone interviews using a semistructured interview guide. METHODS: We conducted a secondary analysis of qualitative data collected from focus groups and telephone interviews from July 2017 to January 2018. Two research team members coded the transcribed data to the 14 TDF domains using a modified approach of the Framework Method. We linked the common TDF domains to relevant intervention functions from the Behaviour Change Wheel (BCW) to identify potential intervention approaches. We also identified and mapped relationships between the relevant TDF domains to report emerging themes. RESULTS: Six focus groups (37 participants) and 11 telephone interview transcripts were analyzed. Five TDF domains that influenced CKD self-management behavior were identified: environmental context and resources, knowledge, beliefs about capabilities, beliefs about consequences, and social influences. Four BCW intervention functions were identified: education, modeling, persuasion, and environmental restructuring. Four emergent themes, shaped by the populated 14 TDF domains, were identified: What does this mean for me? Help me help myself, How does this make me feel? and Who am I? LIMITATIONS: The TDF was not used to design the interview guide; therefore, there may be underrepresentation of some TDF domains relevant for self-management. CONCLUSION: Our findings highlight 5 TDF domains that can influence CKD self-management behavior and 4 possible intervention approaches to influence behavior change in patients with CKD and their caregivers. Emergent themes highlight participants' interpretation of being diagnosed with CKD, their motivations, feelings, values, and altered identity. This work will inform the codesign of a behavior change intervention to enhance patient self-management of CKD.

CONTEXTE: Les interventions visant à soutenir l'autogestion en santé sont largement acceptées dans le traitement de l'insuffisance rénale chronique (IRC). Cependant, ces interventions tiennent rarement compte des comportements individuels en intégrant un cadre comportemental théorique. Le Theoretical Domains Framework (TDF) pourrait être employé pour faciliter la compréhension des comportements des patients et de leurs fournisseurs de soins en vue d'une autogestion efficace de l'IRC. OBJECTIF: 1. Comprendre les comportements des patients atteints d'IRC, de même que ceux de leurs fournisseurs de soins, et proposer des approches interventionnelles visant à soutenir l'autogestion de l'IRC.2. Explorer la relation entre les 14 domaines du TDF et l'autogestion de l'IRC. TYPE D'ÉTUDE: Une étude qualificative et descriptive utilisant à la fois l'analyse de contenu et l'analyse thématique. CADRE: Un critère fondé sur l'objectif a été utilisé pour recruter des participants partout au Canada. SUJETS: Des Canadiens atteints d'IRC et leurs fournisseurs de soins. MESURES: Des groupes de discussion et des entretiens téléphoniques menés à l'aide d'un guide d'interview semi-structurée. MÉTHODOLOGIE: Nous avons procédé à une analyze secondaire des données qualitatives provenant des groupes de discussion et des entretiens téléphoniques entre juillet 2017 et janvier 2018. Deux chercheurs membres de l'équipe ont codé les données transcrites selon les 14 domaines du TDF à l'aide d'une approche modifiée de The Framework Method. Nous avons relié les domaines courants du TDF aux fonctions d'intervention appropriées du Behaviour Change Wheel (BCW) pour cerner de potentielles approches interventionnelles. Enfin, nous avons établi et cartographié les relations entre les domaines pertinents du TDF pour en dégager les thèmes émergents. RÉSULTATS: L'analyse porte sur six groupes de discussion (37 participants) et 11 entretiens téléphoniques. Il en est ressorti cinq domaines du TDF ayant influencé l'autogestion de l'IRC (les ressources et le contexte environnemental, les connaissances, les croyances relatives aux capacités, les croyances relatives aux conséquences et les influences sociales) et quatre fonctions d'intervention du BCW (l'éducation, le modelage, la persuasion et le réaménagement du milieu). De plus, quatre thèmes émergents, influencés par les 14 domaines du TDF, ont été mis en lumière: Qu'est-ce que cela signifie pour moi? Aidez-moi à m'aider moi-même., Qu'est-ce que cela me fait ressentir? Qui suis-je? LIMITES: Certains domaines du TDF pertinents pour l'autogestion pourraient être sous-représentés puisque le TDF n'a pas été utilisé pour l'élaboration du guide d'interview. CONCLUSION: Nos résultats mettent en lumière cinq domaines du TDF susceptibles d'influencer les comportements en autogestion de l'IRC et quatre approches interventionnelles qui pourraient entraîner des changements de comportement chez les patients atteints d'IRC et leurs fournisseurs de soins. Les thèmes émergents mettent l'accent sur l'interprétation qu'ont les patients du diagnostic de l'IRC, de même que sur leurs motivations, leurs sentiments, leurs valeurs et leur identité modifiée. Ces travaux éclaireront la co-conception d'une intervention facilitant les changements de comportements, en vue d'améliorer l'autogestion de l'IRC par les patients.

Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study.

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.

Decreasing stress and supporting emotional well-being among senior nursing students: A pilot test of an evidence-based intervention.

BACKGROUND: Nursing students can experience stress related to their academic and practice experiences, which can have deleterious effects on physical and emotional well-being. OBJECTIVES: To pilot test an evidence-based intervention, Dialectical Behavior Therapy-Skills Group, designed to promote emotional well-being among nursing students. DESIGN: A single group, pre-posttest design, mixed-method approach. SETTING: A large university situated in a multicultural urban setting. PARTICIPANTS: Senior undergraduate nursing students (n = 31). METHODS: Students participated in an 8-week modified Dialectical Behavior Therapy-Skills Group (DBT-SG) intervention. Quantitative and qualitative data were collected to explore the interventions' feasibility, acceptability, and students' perceptions of its applicability to practice. Students also completed standardized outcome measures of psychological distress and emotional well-being pre- and post-intervention to evaluate preliminary effectiveness. RESULTS: Overall feedback was positive, with participants describing how skill modules helped them establish relationships and manage stress in clinical, academic, and personal settings. Significant reductions in stress and improvements in well-being were also reported. CONCLUSION: Results suggest that DBT-SG offers a promising approach for mitigating nursing students' stress by helping them acquire practice-relevant strengths and self-care strategies. Further research is required to examine the effectiveness of DBT-SG among other nursing student groups, as well as to explore optimal approaches to delivering this intervention in conjunction with nursing curricula.

Storytelling to Support Disease Self-Management by Adults With Type 2 Diabetes.

OBJECTIVES: This pilot project aimed to examine the acceptability and feasibility of a group storytelling intervention to support self-management among adults living with type 2 diabetes. METHODS: Two waves of a single-arm storytelling intervention, consisting of 8 sessions at a community health centre, were delivered to 8 adults with type 2 diabetes. Diabetes educators facilitated each session, in which patients shared stories about diabetes-self-management topics of their choice. Focus groups with both patients and facilitators explored the feasibility and acceptability of the sessions. External raters assessed the fidelity of the intervention's implementation. RESULTS: Overarching themes describe the acceptability and feasibility of the intervention: 1) the facilitation of patient self-direction, group cohesion, collective learning and support; 2) roles of facilitator educator, and peer learner; 3) the intervention's customization to patients' preferences. The sessions were delivered with high fidelity (averaging 84.4%). CONCLUSIONS: Informal group storytelling enables patients to discuss, understand and give personal meaning to the information that was exchanged, and facilitates educators' better understanding of patients' concerns and gaps in knowledge and how-to strategies that can inform their practice. The group storytelling intervention is acceptable to patients and educators and can be delivered with high fidelity. Further research into effective patient recruitment methods and evaluation of the intervention's impact on diabetes self-management is required.

Overview of Self-Management Resources Used by Canadian Chronic Kidney Disease Clinics: A National Survey.

BACKGROUND: Chronic kidney disease (CKD) clinics across Canada provide tailored care for patients with CKD with an aim to slow progression and prevent complications. These clinics provide CKD self-management resources; however, there is limited information about what resources are being used by clinics. We undertook a survey of CKD clinics across Canada to identify self-management resources for adults aged 18 years and over with CKD categories 1 to 5 and not requiring dialysis or transplant. OBJECTIVE: To identify and collate self-management resources (eg, strategies, tools, educational materials) used by CKD clinics across Canada for adults with CKD (categories 1 to 5, not requiring kidney replacement therapy). DESIGN: Self-administered, semistructured electronic survey. SETTING PARTICIPANTS: Canadian CKD clinics with previously identified contact information. METHODS AND MEASUREMENTS: We contacted 57 CKD English-speaking clinics and invited them to complete an online survey. The survey was available from October 2016 to January 2017 and consisted of 17 questions regarding the use and attributes of self-management resources including topic, delivery format, provider, target population, where the intervention was provided, and resource languages. RESULTS: Forty-four clinics (77%) completed the survey. The most common topic was modality education provided in print format, by nurses. The most frequently used resource was the Kidney Foundation of Canada (KFOC) Living With Kidney Disease manual. We also identified that the majority of resources were available in English, targeting both patients and caregivers in the outpatient setting. LIMITATIONS: Our survey included Canadian adult CKD clinics, which may not be generalizability to other settings, such as care of people with CKD in primary care. CONCLUSIONS: Adult CKD clinics across Canada provide some similar resources, but also provide many different self-management resources. Even though some of the same resources were used by multiple clinics, the way they were provided them (ie, provider, location, delivery format) varied by the individual clinics. Knowledge of self-management resources currently provided in CKD clinics, along with synthesis of the literature and patient preferred self-management strategies, will inform the design and development of a novel self-management intervention that is patient-centric and adheres to the principles of self-management.

CONTEXTE: Au Canada, les cliniques de néphropathie chronique prodiguent des soins spécifiques aux patients atteints d'insuffisance rénale chronique (IRC) dans le but de ralentir la progression de la maladie et de prévenir les complications. Ces cliniques offrent des ressources de prise en charge autonome de la maladie, mais on dispose de peu d'information sur les ressources qui sont effectivement offertes aux patients. OBJECTIFS DE L'ÉTUDE: L'étude visait le recensement des ressources de prise en charge autonome (stratégies, outils, documents informatifs et autres) offertes par les cliniques de néphropathie canadiennes à leurs patients adultes atteints d'IRC de stade 1 à 5 ne requérant pas de thérapie de remplacement rénal. TYPE D'ÉTUDE: L'étude a été menée sous la forme d'un sondage électronique semi-structuré et auto-administré. CADRE DE L'ÉTUDE: Le sondage a été présenté à des cliniques de néphropathie chronique canadiennes pour lesquelles nous avions préalablement trouvé une personne-ressource. MÉTHODOLOGIE: Nous avons invité les personnes-ressources de 57 cliniques anglo-canadiennes à compléter notre sondage diffusé en ligne entre octobre 2016 et janvier 2017. Le sondage comptait 17 questions relatives à la nature et à l'utilisation des ressources de prise en charge autonome offertes (sujet, forme, fournisseur, population ciblée, langues, lieu de l'intervention, etc.). RÉSULTATS: Des 57 répondants potentiels approchés, 44 (77 %) ont complété le sondage. La demande d'information la plus souvent mentionnée concernait les modalités de dialyse et la ressource alors fournie consistait en un document informatif remis en version papier par le personnel infirmier. La ressource la plus souvent employée était le guide Vivre à sa façon (en 2 livrets) rédigé par la Fondation canadienne du rein. On a de plus constaté que la majorité des ressources étaient en anglais, la langue commune aux patients et aux fournisseurs de soins en consultation externe. LIMITES DE L'ÉTUDE: Notre sondage s'est limité à des cliniques traitant des adultes atteints d'IRC. Nos résultats pourraient ne pas être généralisables dans d'autres contextes, notamment aux soins prodigués aux patients atteints d'IRC dans les établissements de soins primaires. CONCLUSION: Les cliniques de néphropathie chronique canadiennes proposent certaines ressources similaires de prise en charge autonome aux adultes souffrant d'IRC, mais les ressources diffèrent passablement d'un établissement à un autre. Et bien que plusieurs cliniques recourent aux mêmes ressources, on a noté des variations dans façon de les fournir (fournisseur, lieu de l'intervention, support du document). Une meilleure connaissance des stratégies de gestion autonome privilégiées par les patients et des ressources actuellement offertes dans les cliniques de néphropathie chronique, combinée à une synthèse de la littérature, favorisera l'élaboration de stratégies d'intervention centrées sur les besoins des patients et conformes aux principes de la prise en charge autonome.

Self-management interventions for adults with chronic kidney disease: a scoping review.

OBJECTIVE: To systematically identify and describe self-management interventions for adult patients with chronic kidney disease (CKD). SETTING: Community-based. PARTICIPANTS: Adults with CKD stages 1-5 (not requiring kidney replacement therapy). INTERVENTIONS: Self-management strategies for adults with CKD. PRIMARY AND SECONDARY OUTCOME MEASURES: Using a scoping review, electronic databases and grey literature were searched in October 2016 to identify self-management interventions for adults with CKD stages 1-5 (not requiring kidney replacement therapy). Randomised controlled trials (RCTs), non-RCTs, qualitative and mixed method studies were included and study selection and data extraction were independently performed by two reviewers. Outcomes included behaviours, cognitions, physiological measures, symptoms, health status and healthcare. RESULTS: Fifty studies (19 RCTs, 7 quasi-experimental, 5 observational, 13 pre-post intervention, 1 mixed method and 5 qualitative) reporting 45 interventions were included. The most common intervention topic was diet/nutrition and interventions were regularly delivered face to face. Interventions were administered by a variety of providers, with nursing professionals the most common health professional group. Cognitions (ie, changes in general CKD knowledge, perceived self-management and motivation) were the most frequently reported outcome domain that showed improvement. Less than 1% of the interventions were co-developed with patients and 20% were based on a theory or framework. CONCLUSIONS: There was a wide range of self-management interventions with considerable variability in outcomes for adults with CKD. Major gaps in the literature include lack of patient engagement in the design of the interventions, with the majority of interventions not applying a behavioural change theory to inform their development. This work highlights the need to involve patients to co-developed and evaluate a self-management intervention based on sound theories and clinical evidence.

Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD): Form and Function.

PURPOSE OF REVIEW: This article serves to describe the Can-SOLVE CKD network, a program of research projects and infrastructure that has excited patients and given them hope that we can truly transform the care they receive. ISSUE: Chronic kidney disease (CKD) is a complex disorder that affects more than 4 million Canadians and costs the Canadian health care system more than $40 billion per year. The evidence base for guiding care in CKD is small, and even in areas where evidence exists, uptake of evidence into clinical practice has been slow. Compounding these complexities are the variations in outcomes for patients with CKD and difficulties predicting who is most likely to develop complications over time. Clearly these gaps in our knowledge and understanding of CKD need to be filled, but the current state of CKD research is not where it needs to be. A culture of clinical trials and inquiry into the disease is lacking, and much of the existing evidence base addresses the concerns of the researchers but not necessarily those of the patients. PROGRAM OVERVIEW: The Canadian Institutes of Health Research (CIHR) has launched the national Strategy for Patient-Oriented Research (SPOR), a coalition of federal, provincial, and territorial partners dedicated to integrating research into care. Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is one of five pan-Canadian chronic kidney disease networks supported through the SPOR. The vision of Can-SOLVE CKD is that by 2020 every Canadian with or at high risk for CKD will receive the best recommended care, experience optimal outcomes, and have the opportunity to participate in studies with novel therapies, regardless of age, sex, gender, location, or ethnicity. PROGRAM OBJECTIVE: The overarching objective of Can-SOLVE CKD is to accelerate the translation of knowledge about CKD into clinical research and practice. By focusing on the patient's voice and implementing relevant findings in real time, Can-SOLVE CKD will transform the care that CKD patients receive, and will improve kidney health for future generations.

OBJECTIF DE LA REVUE: Le présent article décrit le réseau Can-SOLVE CKD, un réseau basé sur un programme de projets et d'infrastructures de recherche qui ont soulevé l'enthousiasme des patients et qui nourrissent leur espoir de voir une réelle réforme des soins qu'ils reçoivent. CONTEXTE: L'insuffisance rénale chronique (IRC) est un trouble complexe qui affecte plus de quatre millions de Canadiens et qui engendre au système de santé canadien des coûts annuels de l'ordre de 40 milliards de dollars. Les données probantes sous-tendant les soins en IRC sont rares, et dans les branches où ces données existent, leur intégration à la pratique clinique se montre insuffisante. Ces problèmes sont aggravés d'abord par la grande variabilité du pronostic de la maladie, puis par la difficulté de prévoir quels patients seront les plus susceptibles de développer des complications. Ces lacunes de connaissances et de compréhension de l'IRC doivent manifestement être comblées; cependant, force est de constater que la recherche actuelle sur l'IRC est inadéquate. Outre l'absence d'une culture médicale qui encourage les essais cliniques, les données recueillies rejoignent les préoccupations des chercheurs sans nécessairement refléter celles des patients. PRÉSENTATION DU PROGRAMME: Lancée par l'Institut de recherche en santé du Canada (IRSC), la Stratégie de recherche axée sur le patient (SRAP) consiste en une coalition de partenaires fédéraux, provinciaux et territoriaux visant l'intégration des résultats de la recherche dans les soins prodigués aux patients. Le réseau Can-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease) est l'un des cinq réseaux de recherche pancanadiens sur les maladies chroniques soutenus par la SRAP. L'objectif du réseau Can-SOLVE CKD est tripartite : on souhaite que, d'ici 2020, tous les Canadiens atteints d'IRC (ou à haut risque de développer la maladie) 1- reçoivent les meilleurs soins; 2- obtiennent des résultats de santé optimaux; 3- aient l'occasion de participer à des études cliniques pertinentes (et ce, sans égard à leur âge, leur sexe, leur ethnicité ou leur lieu de résidence). OBJECTIF DU PROGRAMME: L'objectif principal du réseau Can-SOLVE CKD est d'accélérer l'application des connaissances sur l'IRC, tant en recherche qu'en pratique clinique. En s'intéressant aux préoccupations des patients et en appliquant en temps réel les résultats pertinents de la recherche, Can-SOLVE CKD transformera la façon dont seront soignés les patients atteints d'IRC et améliorera la santé rénale globale des générations futures.

Patient-perceived barriers to a screening program for depression: a patient opinion survey of hemodialysis patients.

BACKGROUND: Depression is a prevalent, yet underdiagnosed, psychiatric disorder among patients with end-stage renal disease. Active case identification through routine screening is suggested; however, patient-related barriers may reduce the effectiveness of screening for, and treating, depression. This study aimed to explore the perceived barriers that limit patients from participating in screening and treatment programs for depression. METHODS: In a cross-sectional study of chronic maintenance hemodialysis patients, the Perceived Barriers to Psychological Treatment questionnaire, adapted to include screening, was used to measure perceived barriers. The two-item Patient Health Questionnaire was used to identify patients with depressive symptoms. RESULTS: Of 160 participants, 73.1% reported at least one barrier preventing them from participation [95% confidence interval (95% CI) 66.2-80.0%]. Patients with depressive symptoms were more likely to perceive at least one barrier to a screening program for depression compared with those without depressive symptoms (96% versus 68.9%, respectively; odds ratio = 10.8; 95% CI 1.4-82.8; P = 0.005). The association of the barrier scores with depressive symptoms remained significant after adjustment for patient's characteristics. The most common barriers that patients expressed were concerns about the side effects of any antidepressant medications that may be prescribed (40%), concerns about having more medications (32%), feeling that the problem is not severe enough (23%) and perceiving no risk of depression (23%). CONCLUSIONS: Negative perceptions about depression and its treatment among hemodialysis patients constitute an important barrier to identifying this condition and first need to be addressed before implementing a screening program in this population.

Provider perspectives on treatment decision-making in nephrotic syndrome.

BACKGROUND: Managing patients with nephrotic syndrome (NS) remains difficult for the practicing nephrologist. This often young patient population is faced with a debilitating, relapsing and remitting disease with non-specific treatment options that are often poorly tolerated. Clinicians managing these complex patients must attempt to apply disease-specific evidence while considering the individual patient's clinical and personal situation. METHODS: We conducted qualitative interviews to ascertain the provider perspectives of NS, treatment options and factors that influence recommendations for disease management, and administered a survey to assess both facilitators and barriers to the implementation of the Kidney Disease: Improving Global Outcomes (KDIGO) guidelines. RESULTS: When making treatment recommendations, providers considered characteristics of various treatments such as efficacy, side effects and evaluation of risk versus benefit, taking into account how the specific treatment fit with the individual patient. Time constraints and the complexity of explaining the intricacies of NS were noted as significant barriers to care. Although the availability of guidelines was deemed a facilitator to care, the value of the KDIGO guidelines was limited by the perception of poor quality of evidence. CONCLUSIONS: The complexity of NS and the scarcity of robust evidence to support treatment recommendations are common challenges reported by nephrologists. Future development and use of shared learning platforms may support the integration of best available evidence, patient/family preferences and exchange of information at a pace that is unconstrained by the outpatient clinic schedule.

Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome.

Background: People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills and integrate illness into daily life. However, the learning needs of adult patients and parents of children with NS are unknown. We therefore explored patient and parent perspectives on learning needs related to NS as part of a larger study to develop a shared learning tool for NS. Methods: Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25). Results: The complexity of NS and its treatment made decision making challenging, as patients/parents often had to assimilate information about a condition that is poorly understood. Specific informational needs related to understanding the diagnosis and treatment approaches as well as learning to manage NS were identified. Difficulty in getting accurate information often made learning challenging. The importance of learning to monitor their condition, including understanding triggers that might precipitate a relapse, was highlighted, underscoring the need for individualized approaches to ensure unique learning needs are addressed. Conclusions: Our findings reveal some of the unique concerns of people with NS given its uncertain course and the limited information available specific to NS. These results suggest the need for shared communication between the patient/parents and providers to elicit the patient's/parents' understanding of NS and to support them in meeting their unique learning needs.