Purpose of Review:To hear from living kidney donors and recipients about what they perceive are the barriers to living donor kidney transplantation, and how patients can develop and lead innovative solutions to increase the rate and enhance the experiences of living donor kidney transplantation in Ontario.Sources of Information:A one-day patient-led workshop on March 10th, 2016 in Toronto, Ontario.Methods:Participants who were previously engaged in priority-setting exercises were invited to the meeting by patient lead, Sue McKenzie. This included primarily past kidney donors, kidney transplant recipients, as well as researchers, and representatives from renal and transplant health care organizations across Ontario.Key Findings:Four main barriers were identified: lack of education for patients and families, lack of public awareness about living donor kidney transplantation, financial costs incurred by donors, and health care system-level inefficiencies. Several novel solutions were proposed, including the development of a peer network to support and educate patients and families with kidney failure to pursue living donor kidney transplantation; consistent reimbursement policies to cover donors’ out-of-pocket expenses; and partnering with the paramedical and insurance industry to improve the efficiency of the donor and recipient evaluation process.Limitations:While there was a diversity of experience in the room from both donors and recipients, it does not provide a complete picture of the living kidney donation process for all Ontario donors and recipients. The discussion was provincially focused, and as such, some of the solutions suggested may already be in practice or unfeasible in other provinces.Implications:The creation of a patient-led provincial council was suggested as an important next step to advance the development and implementation of solutions to overcome patient-identified barriers to living donor kidney transplantation.

Plain English summaryFoundations in Patient-Oriented Research is a course designed and piloted in Canada to help patients, researchers, health care professionals and health system decision-makers gain an introductory understanding of patient-oriented research, the research enterprise, and how to work in a team. The course curriculum was co-developed by a diverse group of people with different lived experiences and relevant expertise. The course is meant to be delivered in a ‘co-learning format’ with classes comprised of all the above stakeholder groups learning together. The purpose of this study was to explore the experiences of the project leaders, developers, facilitators and patient co-facilitators who were involved in the process of co-developing, piloting and revising the curriculum.Our findings suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but it provided valuable learning experiences about patient-oriented research for the project leaders, developers, facilitators and patient co-facilitators. These findings and the resulting recommendations may provide guidance for other learning and development groups wishing to undertake a similar project.Abstract Background Foundations in Patient-Oriented Research is a course designed and piloted in Canada to build mutually beneficial relationships for conducting patient-oriented research by ensuring that relevant stakeholders – patients, researchers, health care professionals and health system decision-makers – have a common foundational understanding of patient-oriented research, the research enterprise, and team dynamics. The curriculum was co-developed by a group of patients, researchers, patient engagement experts and curriculum development experts and involved consultations with broader groups of the relevant stakeholders mentioned above. It was designed to be delivered in a ‘co-learning format’ with classes comprised of all stakeholder groups learning together. The purpose of this study was to explore the experiences of individuals involved in the process of co-developing, piloting and revising Foundations in Patient-Oriented Research. Methods An embedded case study was conducted with individuals who were involved in the co-development, pilot and revision of Foundations in Patient-Oriented Research. These individuals took on different roles during the curriculum development process, including project co-lead, developer, facilitator, and patient co-facilitator. The constant comparison method was used to inductively develop themes from the two focus group sessions. Results Discussions from the focus groups revealed the value of co-building the content, co-facilitating the course sessions, and the importance of the co-learning format. The training itself was perceived as valuable and the systematic approach to co-development was perceived as a success. Several barriers were identified, including the amount of...

Purpose of review:Provision of education to inform decision making for renal replacement therapy (RRT) is a key component in the management of chronic kidney disease (CKD), yet patients report suboptimal satisfaction with the process of selecting a dialysis modality. Our purpose is to review the influencers of RRT decision making in the CKD population, which will better inform the process of shared decision making between clinicians and patients.Sources of information:PubMed and Google Scholar.Methods:A narrative review was performed using the main terms “chronic kidney disease,” “CKD,” “dialysis,” “review,” “decision-making,” “decision aids,” “education,” and “barriers.” Only articles in English were accessed. The existing literature was critically analyzed from a theoretical and contextual perspective and thematic analysis was performed.Key findings:Eight common themes were identified as influencers for decision making. “Patient-focused” themes including social influence, values and beliefs, comprehension, autonomy and sociodemographics, and “clinician-focused” themes including screening, communication, and engagement. Early predialysis education and decision aids can effectively improve decision making. Patient-valued outcomes need to be more fully integrated into clinical guidelines.Limitations:This is not a systematic review; therefore, no formal tool was utilized to evaluate the rigor and quality of studies included and findings may not be generalizable.Implications:Standardized comprehensive RRT education programs through multidisciplinary health teams can help optimize CKD patient education and shared decision making. Involving patients in the research process itself and implementing patient values and preferences into clinical guidelines can help to achieve a patient-centered model of care.

Background: Many patients with kidney failure will live longer and healthier lives if they receive a kidney transplant rather than dialysis. However, multiple barriers prevent patients from accessing this treatment option. Objective: To determine if a quality improvement intervention provided in chronic kidney disease (CKD) programs (vs. usual care) enables more patients with no recorded contraindications to kidney transplant to complete more steps toward receiving a kidney transplant. Design: This protocol describes a pragmatic 2-arm, parallel-group, open-label, registry-based, cluster-randomized clinical trial—the Enhance Access to Kidney Transplantation and Living Kidney Donation (EnAKT LKD) trial. Setting: All 26 CKD programs in Ontario, Canada, with a trial start date of November 1, 2017. The original end date of March 31, 2021 (3.4 years) has been extended to December 31, 2021 (4.1 years) due to the COVID-19 pandemic. Participants: During the trial, the 26 CKD programs are expected to care for more than 10 000 adult patients with CKD (including patients approaching the need for dialysis and patients receiving dialysis) with no recorded contraindications to a kidney transplant. Intervention: Programs were randomly allocated to provide a quality improvement intervention or usual care. The intervention has 4 main components: (1) local quality improvement teams and administrative support; (2) tailored education and resources for staff, patients, and living kidney donor candidates; (3) support from kidney transplant recipients and living kidney donors; and (4) program-level performance reports and oversight by program leaders. Primary Outcome: The primary outcome is the number of key steps completed toward receiving a kidney transplant analyzed at the cluster level (CKD program). The following 4 unique steps per patient will be counted: (1) patient referred to a transplant center for evaluation, (2) at least one living kidney donor candidate contacts a transplant center for an intended recipient and completes a health history questionnaire to begin their evaluation, (3) patient added to the deceased donor transplant wait list, and (4) patient receives a kidney transplant from a living or deceased donor. Planned Primary Analysis: Study data will be obtained from Ontario’s linked administrative healthcare databases. An intent-to-treat analysis will be conducted comparing the primary outcome between randomized groups using a 2-stage approach. First stage: residuals are obtained from fitting a regression model to individual-level variables ignoring intervention and clustering effects. Second stage: residuals from the first stage are aggregated at the cluster level as the outcome. Limitations: It may not be possible to isolate independent effects of each intervention component, the usual care group could adopt intervention components leading to contamination bias, and the relatively small number of clusters could mean the 2 arms are not balanced on all baseline prognostic factors. Conclusions: The EnAKT LKD trial will provide high-quality evidence on whether a multi-component quality improvement intervention helps patients complete more steps toward receiving a kidney transplant. Trial registration: Clinicaltrials.gov; identifier: NCT03329521.

Background:Patients with chronic kidney disease (CKD) are asked to choose a renal replacement therapy or conservative management. Education and knowledge transfer play key roles in this decision-making process, yet they remain a partially met need.Objective:We sought to understand the dialysis modality decision-making process through exploration of the predialysis patient experience to better inform the educational process.Design:Qualitative descriptive study.Setting:Kidney Care Centre of London Health Sciences Centre in London, Ontario, Canada.Patients:Twelve patients with CKD, with 4 patients on in-center hemodialysis, home hemodialysis, and peritoneal dialysis, respectively.Measurements:Not applicable.Methods:We conducted semistructured interviews with each participant, along with any family members who were present. Interviews were transcribed verbatim. Conventional content analysis was used to analyze the transcripts for common themes. Representative quotes were decided via team consensus. A patient collaborator was part of the research team.Results:Three themes influenced dialysis modality decision making: (i) Patient Factors: individualization, autonomy, and emotions; (ii) Educational Factors: tailored education, time and preparation, and available resources; and (iii) Support Systems: partnership with health care team, and family and friends.Limitations:Sample not representative of wider CKD population. Limited number of eligible patients. Poor recall may affect findings.Conclusions:Modality decision making is a complex process, influenced by the patient’s health literacy, willingness to accept information, predialysis lifestyle, support systems, and values. Patient education requires the flexibility to individualize the delivery of a standardized CKD curriculum in partnership with a patient-health care team, to fulfill the goal of informed, shared decision making.

BackgroundThere is a worldwide shortage of organs available for transplant, leading to preventable mortality associated with end-stage organ disease. While most citizens in many countries with an intent-to-donate “opt-in” system support organ donation, registration rates remain low. In Canada, most Canadians support organ donation but less than 25% in most provinces have registered their desire to donate their organs when they die. The family physician office is a promising yet underused setting in which to promote organ donor registration and address known barriers and enablers to registering for deceased organ and tissue donation. We developed a protocol to evaluate an intervention to promote registration for organ and tissue donation in family physician waiting rooms.Methods/designThis protocol describes a planned, stepped-wedge, cluster randomized registry trial in six family physician offices in Ontario, Canada to evaluate the effectiveness of reception staff providing patients with a pamphlet that addresses barriers and enablers to registration including a description of how to register for organ donation. An Internet-enabled tablet will also be provided in waiting rooms so that interested patients can register while waiting for their appointments. Family physicians and reception staff will be provided with training and/or materials to support any conversations about organ donation with their patients. Following a 2-week control period, the six offices will cross sequentially into the intervention arm in randomized sequence at 2-week intervals until all offices deliver the intervention. The primary outcome will be the proportion of patients visiting the office who are registered organ donors 7 days following their office visit. We will evaluate this outcome using routinely collected registry data from provincial administrative databases. A post-trial qualitative evaluation process will assess the experiences of reception staff and family physicians with the intervention and the stepped-wedge trial design.DiscussionPromoting registration for organ donation in family physician offices is a potentially useful strategy for increasing registration for organ donation. Increased registration may ultimately help to increase the number of organs available for transplant. The results of this trial will provide important preliminary data on the effectiveness of using family physician offices to promote registration for organ donation.Trial registrationClinicalTrials.gov, ID: NCT03213171. Registered on 11 July 2017.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-017-2333-5) contains supplementary material, which is available to authorized users.

Ahmed Al-Jaishi for their instrumental involvement in the MyTEMP clinical trial. They also thank all MyTEMP investigators, and other key individuals, for their roles in the development and continuation of the trial.

Plain language summary: Diabetes care can benefit people with both diabetes and advanced kidney disease, but getting this care can be an ordeal. In this study, we explored the health care experiences of these patients and reviewed how to better support their diabetes care. We partnered with 2 patients with advanced kidney disease and diabetes by inviting them to join our study team as full research partners. They were involved in all aspects of this study from its beginnings. We then interviewed 12 patients with diabetes and advanced kidney disease including those using dialysis. Patients reported being burdened by too many medical appointments, noted communication issues between their care providers and felt each of their providers addressed only 1 aspect of their disease. They faced challenges caring for their diabetes and found therapies difficult to afford. Patients suggested that coordinated diabetes care, self-management support and diabetes education might help them manage their diabetes. In this project, we learned of many challenges that patients with diabetes and kidney disease face in our health care system. Researchers and policy-makers should consider patient suggestions when developing new diabetes care strategies. W ith better treatments and improved survival, patients with diabetes often live longer than in the past, but with other medical conditions. 1 A common comorbidity, affecting 25%-50% of patients with diabetes, is chronic kidney disease. 2 Patients with diabetes and kidney disease are at high risk of diabetes-related complications, 3-5 are often socioeconomically