Integrating the patient voice: patient-centred and equitable clinical risk prediction for kidney health and disease.

PURPOSE OF REVIEW: Personalized approaches to care are increasingly common in clinical nephrology. Although risk prediction models are developed to estimate the risk of kidney-disease related outcomes, they infrequently consider the priorities of patients they are designed to help. RECENT FINDINGS: This review discusses certain steps in risk prediction tool development where patients and their priorities can be incorporated. Considering principles of equity throughout the process has been the focus of recent literature. SUMMARY: Applying a person-centred lens has implications for several aspects of risk prediction research. Incorporating the patient voice may involve partnering with patients as researchers to identify the target outcome for the tool and/or determine priorities for outcomes related to the kidney disease domain of interest. Assessing the list of candidate predictors for associations with inequity is important to ensure the tool will not widen disparity for marginalized groups. Estimating model performance using person-centred measures such as model calibration may be used to compare models and select a tool more useful to inform individual treatment decisions. Finally, there is potential to include patients and families in determining other elements of the prediction framework and implementing the tool once development is complete.

Peer Support Interventions for People With CKD: A Scoping Review.

RATIONALE & OBJECTIVE: Formalized peer support is a promising approach for addressing the emotional and practical needs of people living with chronic kidney disease (CKD). We aimed to systematically identify and summarize peer support interventions studied in individuals with CKD with or without kidney replacement therapy (KRT). SOURCES OF EVIDENCE: We searched electronic databases and grey literature sources in March 2023. ELIGIBILITY CRITERIA: Studies of any design were eligible if they reported sufficient detail on peer support interventions and outcomes for adults with CKD with or without KRT and/or their caregivers. CHARTING METHODS: We extracted information on study and intervention characteristics and reported outcomes using established frameworks. We summarized quantitative data descriptively and qualitative data thematically. Our approach observed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. RESULTS: We included 77 studies describing 56 unique peer support interventions. Most reports were program evaluations (39%) or randomized controlled trials (27%) published after 2013. Two thirds of interventions focused on in-centre hemodialysis or mixed CKD populations, and three quarters were integrated within a kidney care clinic or program. Whereas most peer interactions centered on informational support, few programs offered focused support in areas such as transplant navigation or dialysis modality selection. Only one third of outcomes were assessed against a comparator group, with results suggesting improvements in psychological health with peer support. LIMITATIONS: Heterogeneity of included studies; lack of rigorous program evaluation. CONCLUSIONS: This review suggests recent growth in peer support programming with a variety of formats and delivery methods to address the diverse needs of people living with kidney disease. Notable gaps in peer support availability for transplant and home dialysis recipients and the lack of rigorous evaluations present opportunities to expand the reach and impact of peer support in the kidney care context.

Deciding to Attend the Emergency Department: Experiences of Patients With Inflammatory Arthritis.

OBJECTIVE: Patients may use emergency departments (EDs) to meet their health needs when ambulatory care systems are not sufficient. We aim to describe contributing factors to the decision made by persons with inflammatory arthritis (IA) to present to the ED, as well as their experiences of ED care and postdischarge follow-up. METHODS: An embedded mixed-methods approach was taken to contextualize quantitative data with associated free-text responses from an online survey distributed to residents of Alberta with a known IA condition and an ED visit. RESULTS: Eighty-two persons (63% aged 16-55 years, 48% female, 50% urban residents) with rheumatoid arthritis (48%), psoriatic arthritis (12%), spondyloarthritis (6%), or gout (34%) completed the survey. Presenting concerns were arthritis flare (37%), chest pain (15%), injury (12%), and infection (11%). Of all visits, 29% proceeded directly to the ED, 35% attempted accessing ambulatory care first, and 32% arrived for a return visit. In presentations for arthritis flare, patients were aware of the rheumatology service being contacted by the ED provider for advice in just 9% of events. Challenges in healthcare system coordination and system pressures resulted in patients requiring ED attendance to assess their concern. The quality of communication and relationality developed between patients with IA and healthcare providers informed experiences of ED care. CONCLUSION: Modifying rheumatology ambulatory care models could better meet patient needs and ultimately reduce avoidable ED use by patients with IA.

Exploring the prospective acceptability of a healthy food incentive program from the perspective of people with type 2 diabetes and experiences of household food insecurity in Alberta, Canada.

OBJECTIVE: FoodRx is a 12-month healthy food prescription incentive program for people with type 2 diabetes (T2DM) and experiences of household food insecurity. In this study, we aimed to explore potential users' prospective acceptability (acceptability prior to program use) of the design and delivery of the FoodRx incentive and identify factors influencing prospective acceptability. DESIGN: We used a qualitative descriptive approach and purposive sampling to recruit individuals who were interested or uninterested in using the FoodRx incentive. Semi-structured interviews were guided by the theoretical framework of acceptability, and corresponding interview transcripts were analysed using differential qualitative analysis guided by the socioecological model. SETTING: Individuals living in Alberta, Canada. PARTICIPANTS: In total, fifteen adults with T2DM and experiences of household food insecurity. RESULTS: People who were interested in using the FoodRx incentive (n 10) perceived it to be more acceptable than those who were uninterested (n 5). We identified four themes that captured factors that influenced users' prospective acceptability: (i) participants' confidence, views and beliefs of FoodRx design and delivery and its future use (intrapersonal), (ii) the shopping routines and roles of individuals in participants' social networks (interpersonal), (iii) access to and experience with food retail outlets (community), and (iv) income and food access support to cope with the cost of living (policy). CONCLUSION: Future healthy food prescription programs should consider how factors at all levels of the socioecological model influence program acceptability and use these data to inform program design and delivery.

Emergency department utilization by persons with rheumatoid arthritis: a population-based cohort study.

Some emergency department (ED) visits by persons with rheumatoid arthritis (RA) may be avoidable. This study aims to describe ED use by persons with RA in Alberta, Canada over a 10-year period. Using linked population-based administrative datasets, the annual frequency of ED visits, timing of visits, acuity at presentation assessed (Canadian Triage Acuity Scale (CTAS)), return visits within 72 h, and final disposition were assessed. Most responsible diagnoses assessed by the ED provider were categorized. Between 2008 and 2017, a total of 48,633 persons with RA had 416,964 unique ED visits. There was a 41% relative increase in visits over the study period and within a fiscal year 37% of persons with RA on average attended an ED. Half of the visits were assessed as CTAS 4 'Less Urgent' (31%) and CTAS 5 'Non-Urgent' (19%). No specific diagnosis could be assigned in 36% of visits and RA was listed as the most responsible diagnosis in 2.5% of all visits. Hospital admissions, occurring on average for 14% of ED visits, increased by 15% over the 10 years, and were rare for CTAS 4 (6.4%) and CTAS 5 (1.4%) presentations. Male patients (difference to female 1.2%, 95%CI 0.6, 1.7) and urban patients (difference to rural 8.4%, 95%CI 7.7, 9.2) were more frequently admitted to hospital. Persons with RA have increased ED utilization over time, with a significant volume of less urgent and non-urgent visits. Opportunities for appropriate ambulatory care provision to reduce acute care use should be identified.

Occupational Priorities of People on Hemodialysis Who Participated in Energy Management Education.

Background. People with kidney failure who undergo hemodialysis treatment and experience chronic fatigue identify negative effects on occupational performance and participation as a key aspect of their illness experience. Purpose. To describe the occupational performance and participation problems of people treated with hemodialysis who live with debilitating fatigue. Method. Fifteen participants, who were randomized to participate in an energy management intervention as part of a randomized controlled trial, completed two occupation-based assessments at baseline and chose three priority occupational performance or participation problems to address as goals during the intervention. Results were analyzed using descriptive statistics (counts and percentages). Findings. Fifteen participants (mean age 60, 53% male) completed the occupation-based assessments. Participants stated that they wanted or needed more energy for a median of 22 of 55 occupations. Going out for food/drinks (n = 11), going to a movie/concert/performance (n = 10), and food preparation/clean-up (n = 10) were the top occupations for which participants required more energy. Prioritized occupational performance and participation problems most often fell within the household management (14 goals), self-care (6 goals), and hobbies (5 goals) domains. Conclusion. Occupational performance and participation problems are extensive among people treated with hemodialysis who live with debilitating fatigue. There is a clear need for occupation-based interventions that optimize occupational performance and participation in this population.

Emergency Department Use Among Adults Receiving Dialysis.

Importance: People with kidney failure receiving maintenance dialysis visit the emergency department (ED) 3 times per year on average, which is 3- to 8-fold more often than the general population. Little is known about the factors that contribute to potentially preventable ED use in this population. Objective: To identify the clinical and sociodemographic factors associated with potentially preventable ED use among patients receiving maintenance dialysis. Design, Setting, and Participants: This cohort study used linked administrative health data within the Alberta Kidney Disease Network to identify adults aged 18 years or older receiving maintenance dialysis (ie, hemodialysis or peritoneal dialysis) between April 1, 2010, and March 31, 2019. Patients who had been receiving dialysis for more than 90 days were followed up from cohort entry (defined as dialysis start date plus 90 days) until death, outmigration from the province, receipt of a kidney transplant, or end of study follow-up. The Andersen behavioral model of health services was used as a conceptual framework to identify variables related to health care need, predisposing factors, and enabling factors. Data were analyzed in March 2024. Main Outcomes and Measures: Rates of all-cause ED encounters and potentially preventable ED use associated with 4 kidney disease-specific ambulatory care-sensitive conditions (hyperkalemia, heart failure, volume overload, and malignant hypertension) were calculated. Multivariable negative binomial regression models were used to examine the association between clinical and sociodemographic factors and rates of potentially preventable ED use. Results: The cohort included 4925 adults (mean [SD] age, 60.8 [15.5] years; 3071 males [62.4%]) with kidney failure receiving maintenance hemodialysis (3183 patients) or peritoneal dialysis (1742 patients) who were followed up for a mean (SD) of 2.5 (2.0) years. In all, 3877 patients had 34 029 all-cause ED encounters (3100 [95% CI, 2996-3206] encounters per 1000 person-years). Of these, 755 patients (19.5%) had 1351 potentially preventable ED encounters (114 [95% CI, 105-124] encounters per 1000 person-years). Compared with patients with a nonpreventable ED encounter, patients with a potentially preventable ED encounter were more likely to be in the lowest income quintile (38.8% vs 30.9%; P < .001); to experience heart failure (46.8% vs 39.9%; P = .001), depression (36.6% vs 32.5%; P = .03), and chronic pain (60.1% vs 54.9%; P = .01); and to have a longer duration of dialysis (3.6 vs 2.6 years; P < .001). In multivariable regression analyses, potentially preventable ED use was higher for younger adults (incidence rate ratio [IRR], 1.69 [95% CI, 1.33-2.15] for those aged 18 to 44 years) and patients with chronic pain (IRR, 1.35 [95% CI, 1.14-1.61]), greater material deprivation (IRR, 1.57 [95% CI, 1.16-2.12]), a history of hyperkalemia (IRR, 1.31 [95% CI, 1.09-1.58]), and historically high ED use (ie, ≥3 ED encounters in the prior year; IRR, 1.46 [95% CI, 1.23-1.73). Conclusions and Relevance: In this study of adults receiving maintenance dialysis in Alberta, Canada, among those with ED use, 1 in 5 had a potentially preventable ED encounter; reasons for such encounters were associated with both psychosocial and medical factors. The findings underscore the need for strategies that address social determinants of health to avert potentially preventable ED use in this population.

Patient Preferences and Priorities for the Design of an AKI Prevention Trial: Findings from a Consensus Workshop.

INTRODUCTION: High-quality clinical trials are needed to establish the efficacy and safety of novel therapies for acute kidney injury (AKI) prevention. In this consensus workshop, we identified patient and caregiver priorities for recruitment, intervention delivery, and outcomes of a clinical trial of cilastatin to prevent nephrotoxic AKI. METHODS: We included adults with lived experience of AKI, chronic kidney disease, or risk factors for AKI (e.g., critical care hospitalization), and their caregivers. Using a modified nominal group technique approach, we conducted a series of hybrid in-person/virtual discussions covering 3 clinical trial topic areas: (1) consent and recruitment; (2) intervention delivery; and (3) trial outcomes. Participants voted on their top preferences in each topic area, and discussion transcripts were analyzed inductively using conventional content analysis. RESULTS: Thirteen individuals (11 patients, 2 caregivers) participated in the workshop. For consent and recruitment, participants prioritized technology enabled pre-screening and involvement of family members in the consent process. For intervention delivery, participants prioritized measures to facilitate ease of intervention administration and return visits. For trial outcomes, participants identified kidney-related and other clinical outcomes (e.g., AKI, chronic kidney disease, cardiovascular events) as top priorities. Analysis of transcripts provided insight into care team and family involvement in trial-related decisions, implications of allocation to a placebo arm, and impact of participants' experiences of AKI and critical illness. CONCLUSION: Findings from our workshop will directly inform development of a clinical trial protocol of cilastatin for nephrotoxic AKI prevention and can assist others in patient-centered approaches to AKI trial design.

The effect of goal-directed fluid therapy on delayed graft function in kidney transplant recipients: A systematic review and meta-analysis.

Delayed graft function (DGF) is a common post-operative complication with potential long-term sequelae for many kidney transplant recipients, and hemodynamic factors and fluid status play a role. Fixed perioperative fluid infusions are the standard of care, but more recent evidence in the non-transplant population has suggested benefit with goal-directed fluid strategies based on hemodynamic targets. We searched MEDLINE, EMBASE, Cochrane Controlled Trials Registry and Google Scholar through December 2022 for randomized controlled trials comparing risk of DGF between goal-directed and conventional fluid therapy in adults receiving a living or deceased donor kidney transplant. Effect estimates were reported with odds ratios (OR) and pooled using random effects meta-analysis. We identified 4 studies (205 participants) that met the inclusion criteria. The use of goal-directed fluid therapy had no significant effect on DGF (OR 1.37 95% CI, 0.34-5.6; p = 0.52; I2 = 0.11). Subgroup analysis examining effects among deceased and living kidney donation did not reveal significant differences in the effects of fluid strategy on DGF between subgroups. Overall, the strength of the evidence for goal-directed versus conventional fluid therapy to reduce DGF was of low certainty. Our findings highlight the need for larger trials to determine the effect of goal-directed fluid therapy on this patient-centered outcome.