Explore the vast range of titles available.

An application of telemedicine of growing interest and relevance is the use of personal computers and mobile devices to collect patient-reported outcomes (PROs). PROs are self-reports of patients’ health status without interpretation by anyone else. The tools developed to assess PROs are known as patient-reported outcomes measures (PROMs). The technological innovations that have led to an increased ownership of electronic devices have also facilitated the development of electronic PROMs (ePROMs). ePROMs are a conduit for telemedicine in the care of patients with chronic diseases. Various studies have demonstrated that the use of ePROMs in routine clinical practice is both acceptable and feasible with patients increasingly expressing a preference for an electronic mode of administration. There is increasing evidence that the use of electronic patient-reported outcome (ePROMs) could have significant impacts on outcomes valued by patients, healthcare providers and researchers. Whilst the development and implementation of these systems may be initially costly and resource-intensive, patient preferences and existing evidence to support their implementation suggests the need for continued research prioritisation in this area. This narrative review summarises and discusses evidence of the impact of ePROMs on clinical parameters and outcomes relevant to chronic diseases. We also explore recently published literature regarding issues that may influence the robust implementation of ePROMs for routine clinical practice.

BackgroundLarge differences exist in chronic kidney disease (CKD) rates between countries, but differences within diverse populations living in the same setting with universal healthcare are not well understood.ObjectivesTo compare dialysis prevalence, CKD risk factors and control, and CKD progression by ethnicity and birth country in an ethnoculturally diverse setting with high rates of kidney disease and universal healthcare.SettingScarborough, Toronto’s most diverse region and site of Canada’s largest regional dialysis programme.Design and participantsDouble observational cohort study of 2397 participants: a retrospective cohort of 1116 residents who received dialysis between 2016–2019, and a prospective cohort of 1281 individuals with non-dialysis CKD followed for 3 years between 2010–2015 in Scarborough.Outcome measurementsDialysis prevalence, calculated by comparing frequencies of birth countries and ethnicities in the dialysis cohort with census-derived community frequencies. Secondary outcome measurements were traditional CKD risk factor prevalence (diabetes, hypertension, cardiovascular disease) and control (haemoglobin A1c, blood pressure); and CKD progression (estimated glomerular filtration rate decline, proteinuria) adjusted for socioeconomic status in the non-dialysis cohort.ResultsDialysis prevalence was 4.2 times higher in immigrants (p<0.001), and highest in those born in the Caribbean, Southeast Asia and South Asia. Ethnicity-based differences were smaller, with rates up to 1.7-fold higher in Southeast Asian, Black and South Asian compared with White persons. Diabetes prevalence was highest in immigrants from South Asia, Southeast Asia and the Caribbean. Blood pressure and haemoglobin A1c were higher in Caribbean-born individuals. Kidney function declined fastest in patients born in the Caribbean, South Asia and East Asia. Proteinuria increased most rapidly in patients born in the Caribbean, Southeast Asia and South Asia. The year of immigration did not influence these secondary outcomes.ConclusionsDespite universal healthcare access, marked disparities in CKD risks and rates exist within ethnoculturally diverse immigrants living in this Canadian kidney disease hotspot. More focused research and tailored interventions are required.

Kidney transplantation with grafts procured after donation-after-cardiac death (DCD) has led to an increase in incidence of delayed graft function (DGF). It is thought that the warm ischemic (WI) insult encountered during DCD procurement is the cause of this finding, although few studies have been designed to definitely demonstrate this causation in a transplantation setting. Here, we use a large animal renal transplantation model to study the effects of prolonged WI during procurement on post-transplantation renal function. Kidneys from 30 kg-Yorkshire pigs were procured following increasing WI times of 0 min (Heart-Beating Donor), 30 min, 60 min, 90 min, and 120 min (n = 3–6 per group) to mimic DCD. Following 8 h of static cold storage and autotransplantation, animals were followed for 7-days. Significant renal dysfunction (SRD), resembling clinical DGF, was defined as the development of oliguria < 500 mL in 24 h from POD3-4 along with POD4 serum potassium > 6.0 mmol/L. Increasing WI times resulted in incremental elevation of post-operative serum creatinine that peaked later. DCD120min grafts had the highest and latest elevation of serum creatinine compared to all groups (POD5: 19.0 ± 1.1 mg/dL, p  < 0.05). All surviving animals in this group had POD4 24 h urine output < 500 cc (mean 235 ± 172 mL) and elevated serum potassium (7.2 ± 1.1 mmol/L). Only animals in the DCD120min group fulfilled our criteria of SRD ( p  = 0.003), and their renal function improved by POD7 with 24 h urine output > 500 mL and POD7 serum potassium < 6.0 mmol/L distinguishing this state from primary non-function. In a transplantation survival model, this work demonstrates that prolonging WI time similar to that which occurs in DCD conditions contributes to the development of SRD that resembles clinical DGF.

Purpose The Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools have not been evaluated in patients treated with renal replacement therapy. Methods Kidney transplant recipients and patients on dialysis were recruited in Toronto. Patients were classified as having moderate/severe depression and anxiety symptoms using the established cut-off score of ≥ 10 on the Patient Health Questionnaire-9 (PHQ-9) and the General Anxiety Disorder-7 (GAD-7) questionnaires. Results This study included 931 participants; 62% male, mean age (SD) 55(16), and 52% White. All participants completed ESASr, however only 748 participants completed PHQ-9 and 769 participants completed GAD-7. Correlation between ESASr item scores and legacy scores were moderately strong (ESASr-D/PHQ-9: 0.61; ESASr-A/GAD-7: 0.64). We found good discrimination for moderate/severe depression and anxiety [area under the receiver operating characteristics curve (95% CI) ESASr-D 0.82(0.78–0.86); ESASr-A 0.87 (0.82, 0.92)]. The cut-off ≥ 2 for ESASr-D [Sensitivity = 0.76; Specificity = 0.77; Likelihood Ratio (LR) + = 3.29; LR − = 0.31] and ≥ 4 for ESASr-A (Sensitivity = 0.75; Specificity = 0.87; LR + = 5.76; LR − = 0.29) had the best combination of measurement characteristics. Conclusion The identified ESASr-D and ESASr-A cut-off scores may be used to rule out patients without emotional distress with few false negatives. However, the low sensitivity identified in our analysis suggests that neither ESASr-D or ESASr-A are acceptable as standalone screening tools.

Background: Solid Organ Transplant Recipients (SOTRs) face an elevated risk of Sars-CoV-2 infection and poor outcomes if they contract the infection. This can induce or exacerbate anxiety and depressive symptoms. We used the Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety (A) and Depression (D) scores to conduct a repeated cross-sectional (“pseudo-longitudinal”) comparison of SOTRs’ anxiety and depressive symptoms before and after the COVID-19 pandemic onset. Methods: This secondary analysis used cross-sectional data from a convenience sample of adult SOTRs (kidney, kidney–pancreas, and liver) recruited between 2016 and 2024. The exposure was categorized as follows: “Pandemic Experience” was categorized as PRE (pre-pandemic reference; transplanted and anxiety and depressive symptoms assessed pre-pandemic onset), POST-1 (transplanted before and assessed after onset), and POST-2 (transplanted and assessed after onset). The outcomes were PROMIS-A and PROMIS-D scores. The differences were assessed using multivariable linear regression-estimated means. Results: Of the 816 participants, 588 (72%) were PRE, 135 (17%) were POST-1, and 93 (11%) were POST-2. In the fully adjusted model, the POST-2 group had significantly higher PROMIS-A scores (more severe symptoms) compared with PRE (adjusted mean [95% CI]: 54.2 [52.3; 56.1] vs. 51.7 [50.9; 52.4], p = 0.02). The proportion of patients with potentially clinically significant anxiety was also higher in the POST-2 group, compared with PRE (OR [95%CI] 1.59 [1.0; 2.5]). The PROMIS-A scores were similar between PRE and POST-1, and between POST-1 and POST-2. The PROMIS-D scores were not different across the exposure groups. Conclusions: SOTRs transplanted after the pandemic onset experienced more anxiety but similar depression symptoms compared with pre-pandemic levels. Future research should explore mental health support for SOTRs during crisis situations involving infectious risk.

Background: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada. Objective: To characterize the current state of literature on access to KT and LDKT among Indigenous communities in Canada and to answer the research question, “what factors may influence inequitable access to KT among Indigenous communities in Canada.” Eligibility criteria: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in Indigenous communities in Canada. A total of 26 articles were analyzed thematically. Sources of evidence: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. Charting methods: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. Results: Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to KT. Barriers include insufficient incorporation of Indigenous ways of knowing and being in information dissemination and care for ESKD and KT, spiritual concerns, health beliefs, logistical hurdles to accessing care, and systemic mistrust resulting from colonialism and systemic racism. Limitations: This review included studies that used various methodologies and did not assess study quality. Data on Indigenous status were not reported or defined in a standardized manner. Indigenous communities are not homogeneous and views on organ donation and KT vary by individual. Conclusions: Our scoping review has identified potential barriers that Indigenous communities may face in accessing KT and LDKT. Further research is urgently needed to better understand barriers and support needs and to develop strategies to improve equitable access to KT and LDKT for Indigenous populations in Canada.

Chronic kidney disease (CKD) is a complex medical condition that is associated with several comorbidities and requires comprehensive medical management. Given the chronic nature of the condition, its frequent association with psychosocial distress, and its very significant symptom burden, the subjective patient experience is key toward understanding the true impact of CKD on the patients' life. Patient-reported outcome measures are important tools that can be used to support patient-centered care and patient engagement during the complex management of patients with CKD. The routine collection and use of patient-reported outcomes (PROs) in clinical practice may improve quality of care and outcomes, and may provide useful data to understand the disease from both an individual and a population perspective. Many tools used to measure PROs focus on assessing health-related quality of life, which is significantly impaired among patients with CKD. Health-related quality of life, in addition to being an important outcome itself, is associated with clinical outcomes such as health care use and mortality. In Part 1 of this review, we provide an overview of PROs and implications of their use in the context of CKD. In Part 2, we will review the selection of appropriate measures and the relevant domains of interest for patients with CKD.

Simple and validated physical function measures are needed for kidney transplant candidates because pretransplant low physical function is a common and potentially modifiable risk factor. This single-center retrospective study investigated the associations between pretransplant physical function assessed by the Patient-Reported Outcomes Measurement Information System ® Physical Function (PROMIS-PF) computer adaptive testing and early posttransplant outcomes. We analyzed 154 adult kidney-alone transplant recipients. The median pretransplant PROMIS-PF score was 43 (interquartile range, 39–47). Patient characteristics were not significantly different across the score category (normal, score ≥45; mild, score of 40–45; and moderate/severe, score <40). The PROMIS-PF score was not associated with length of transplant hospital stay, delayed graft function, 6-month and 12-month graft function, or 12-month patient and graft survival. However, a lower PROMIS-PF score was significantly associated with a higher risk of emergency room visits [adjusted odds ratios compared to normal: mild, 1.68 (95% confidence interval, 0.76–3.83); moderate/severe, 3.23 (1.34–7.79)] and rehospitalization [adjusted odds ratios: mild, 2.61 (1.16–5.90); moderate/severe, 2.53 (1.07–6.00)] within 1 month posttransplant. Results suggest that PROMIS-PF is a practical tool for assessing physical function in kidney transplant candidates. Larger studies are needed to confirm the utility of PROMIS-PF to identify transplant candidates who would benefit from pretransplant prehabilitation.

Background: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada, along various demographic dimensions. In this article, we review existing evidence about inequitable access to KT and LDKT for patients from communities marginalized by race and ethnicity in Canada. Objective: To characterize the currently published data on rates of KT and LDKT among East Asian, South Asian, and African, Caribbean, and Black (ACB) Canadian communities and to answer the research question, “what factors may influence inequitable access to KT among East Asian, South Asian, and ACB Canadian communities?.” Eligibility criteria: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in East Asian, South Asian, and ACB Canadian communities. A total of 25 articles were analyzed thematically. Sources of evidence: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. Charting methods: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. Results: East Asian, South Asian, and ACB communities in Canada face barriers in accessing culturally appropriate medical knowledge and care and experience inequitable access to KT. Potential barriers include gaps in knowledge about ESKD and KT, religious and spiritual concerns, stigma of ESKD and KT, health beliefs, social determinants of health, and experiences of systemic racism in health care. Limitations: This review included literature that used various methodologies and did not assess study quality. Data on ethnicity and race were not reported or defined in a standardized manner. The communities examined in this review are not homogeneous and views on organ donation and KT vary by individual. Conclusions: Our review has identified potential barriers for communities marginalized by race and ethnicity in accessing KT and LDKT. Further research is urgently needed to better understand the barriers and support needs of these communities, and to develop strategies to improve equitable access to LDKT for the growingly diverse population in Canada.

Purpose: In this article, we describe a province-wide collaborative project in which we adapted the Explore Transplant (ET) education program for use in Ontario, Canada, to develop Explore Transplant Ontario (ETO). Kidney transplantation (KT), especially living donor kidney transplantation (LDKT), is the best treatment for many patients with end-stage kidney disease (ESKD), with the best patient survival and quality of life and also reduced health care costs. Yet KT and LDKT are underutilized both internationally and in Canada. Research has demonstrated that patients with ESKD who receive personalized transplant education are more likely to complete the transplant evaluation process and to receive LDKT compared with patients who do not receive this education. Sources of information: Research expertise of the lead authors and Medline search of studies assessing the impact of education interventions on access to KT and LDKT. Methods: The ET program, developed by Dr Amy Waterman, has been used in thousands of patients with ESKD in the United States to enhance KT and LDKT knowledge. To adapt this program for use in Ontario, we convened a working group, including patient representatives, nephrologists, transplant coordinators, dialysis nurses, and patient educators from all Ontario KT centers and selected dialysis units. In an iterative process concluding in a consensus workshop, the working group reviewed and edited the text of the original ET program and suggested changes to the videos. Key findings: The adapted program reflects the Ontario health care environment and responds to the specific needs of patients with chronic kidney disease (CKD) in the province. The videos feature Ontario transplant nephrologists, transplant coordinators, and patients, representative of the ethnic diversity in Ontario, sharing their transplant experience and expertise. Despite the changes, ETO is consistent with the quality and style of the original ET program. At the end of this article, we summarize subsequent steps to test and utilize ETO. Those projects, specifically the ETO pilot study and a multicomponent quality improvement initiative to increase utilization of KT and LDKT across Ontario, will be described in full in future papers. Limitations: This article describes a provincial initiative; therefore, our findings may not be fully generalizable without further considerations. The adapted education program has not yet been tested in large trial for effectiveness. Implications: As a program grounded in the theoretical model of behavior change, ETO places patients with ESKD at the center of a complex process of navigating renal replacement therapy modalities and acknowledges a broad range of patient values, priorities, and states of readiness to pursue KT.