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.

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.

Background The Kidney Failure Risk Equation (KFRE) predicts risk of progression to kidney failure and is used to guide clinical decisions for patients with chronic kidney disease (CKD). Methods The KFRE was implemented to guide access to multidisciplinary care for CKD patients in Alberta, Canada, based on their 2-year risk of kidney failure. We used a mixed methods approach to investigate patients’ and providers’ perspectives and experiences 1 year following KFRE implementation. We conducted post-implementation interviews with multidisciplinary clinic providers and with low-risk patients who transitioned from multidisciplinary to general nephrology care. We also administered pre- and post-implementation patient care experience surveys, targeting both low-risk patients discharged to general nephrology and high-risk patients who remained in the multidisciplinary clinic, and provider job satisfaction surveys. Results Twenty-seven interviews were conducted (9 patients, 1 family member, 17 providers). Five categories were identified among patients and providers: targeted care; access to resources outside the multidisciplinary clinics; self-efficacy; patient reassurance and reduced stress; and transition process for low-risk patients Two additional categories were identified among providers only: anticipated concerns and job satisfaction. Patients and providers reported that the risk-based approach allowed the clinic to target care to those most likely to experience kidney failure and most likely to benefit from multidisciplinary care. While some participants indicated the risk-based model enhanced the sustainability of the clinics, others expressed concern that care for low-risk patients discharged from multidisciplinary care, or those now considered ineligible, may be inadequate. Overall, 413 patients completed the care experience survey and 73 providers completed the workplace satisfaction survey. The majority of patients were satisfied with their care in both periods with no overall differences. When considering the responses “Always” and “Often” together versus not, there were statistically significant improvements in domains of access to care, caring staff, and safety of care. There were no differences in healthcare providers’ job satisfaction following KFRE implementation. Conclusions Patients and healthcare providers reported that the risk-based approach improved the focus of the multidisciplinary CKD clinics by targeting patients at highest risk, with survey results suggesting no difference in patient care experience or healthcare provider job satisfaction. Electronic supplementary material The online version of this article (10.1186/s12882-019-1269-2) contains supplementary material, which is available to authorized users.

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.

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.

Background:The kidney failure risk equation (KFRE) provides an estimate of risk of progression to kidney failure, and may guide clinical care.Objective:We aimed to describe patient, family, and health care provider’s perspectives of the perceived benefits and challenges of using a risk-based approach to guide care delivery for patients with advanced chronic kidney disease (CKD), and refine implementation based on their input.Methods:We used qualitative methodology to explore perceived benefits and challenges of implementing a risk-based approach (using the KFRE) to determine eligibility for multidisciplinary CKD care in Southern Alberta. We obtained perspectives from patients and families through focus groups, as well as input from health care providers through interviews and open-ended responses from an online survey. Twelve patients/family members participated in 2 focus groups, 16 health care providers participated in an interview, and 40 health care providers responded to the survey.Results:Overall, participants felt that a KFRE-based approach had the potential to improve efficiency of the clinics by targeting care to patients at highest risk of kidney failure; however, they also expressed concerns about the impact of loss of services for lower risk individuals. Participants also articulated concerns about a perceived lack of capacity for adequate CKD patient care in the community. Our implementation strategy was modified as a result of participants’ feedback.Conclusions:We identified benefits and challenges to implementation of a risk-based approach to guide care of patients with advanced CKD. Based on these results, our implementation strategy has been modified by removing the category of referral back to primary care alone, and instead having that decision made jointly by nephrologists and patients among low-risk patients.

Background:Risk prediction tools are used in a variety of clinical settings to guide patient care, although their use in chronic kidney disease (CKD) care is limited.Objectives:To assess the association of a risk-based model of CKD care on patient care, satisfaction, outcomes, and cost.Design:Mixed-methods with a pre-post design.Setting:We will use mixed-methods and a pre-post design to evaluate use of the Kidney Failure Risk Equation (KFRE) to guide CKD care. The KFRE will be applied to patients currently followed in nephrology multidisciplinary CKD clinics in Alberta, as well as to new patients being considered for multidisciplinary care.Patients:Patients with a 2-year risk of kidney failure ≥10% or estimated glomerular filtration rate (eGFR) ≤15 mL/min/1.73 m2 will be recommended care by a multidisciplinary team coordinated by a nurse clinician and nephrologist, with access to other multidisciplinary resources including dietitians, pharmacists, and social workers as required.Measurements/Methods:Focus groups and interviews will be conducted to qualitatively describe patient and provider perspectives of potential barriers and facilitators to implementation of the risk-based approach to CKD care. Patient and provider surveys will also be used to quantify patient and provider satisfaction before and after the intervention. Finally, administrative data will be used to evaluate the association between the risk-based approach to care and outcomes including health care resource use, frequency of testing, modality choice, and death.Conclusions:Use of a risk-based model of care has the potential to increase use of optimal treatments such as the use of home dialysis and preemptive kidney transplantation, while reducing costs and poor outcomes related to processes of care such as unnecessary laboratory testing; however, there is also potential for unintended consequences. Our mixed-methods approach will integrate perceptions and needs from key stakeholders (including patients with CKD, their families, and their providers) to guide implementation and ensure appropriate modifications.

Background Clinical pathways aim to improve patient care. We sought to determine whether an online chronic kidney disease (CKD) clinical pathway was associated with improvements in CKD management. Methods We conducted a retrospective pre/post population-based cohort study using linked health data from Alberta, Canada. We included adults 18 years or older with mean estimated glomerular filtration rate (eGFR) < 60 ml/min/1.73m2. The primary outcome was measurement of an outpatient urine albumin creatinine ratio (ACR) in a 28-day period, among people without a test in the prior year. Secondary outcomes included use of guideline-recommended drug therapies (angiotensin-converting enzyme inhibitors, angiotensin receptor blockers and statins). Results The study period spanned October 2010 to March 2017. There were 84 independent 28-day periods (53 pre, 31 post pathway implementation) including 345,058 adults. The population was predominantly female (56%) with median age 77 years; most had category 3A CKD (67%) and hypertension (82%). In adjusted segmented regression models, the increase in the rate of change of ACR testing was greatest in Calgary zone (adjusted OR 1.19 per year, 95% CI 1.16–1.21), where dissemination of the pathway was strongest; this increase was more pronounced in those without diabetes (adjusted OR 1.25 per year, 95% CI 1.21–1.29). Small improvements in guideline-concordant medication use were also observed. Conclusions Following implementation of an online CKD clinical pathway, improvements in ACR testing were evident in regions where the pathway was most actively used, particularly among individuals without diabetes.