Inflammatory Arthritis Patient Decision Making to Attend, and Experience of, Emergency Department Use.

OBJECTIVE: Patients may use emergency departments (ED) to meet their health needs whenambulatory care systems are not sufficient. We aim to describe contributing factors to the decision taken by persons with inflammatory arthritis (IA) to present to the ED, and their experiences of ED care and post-discharge 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: 82 persons with RA (48%), PsA (12%), SpA (6%), and Gout (34%) (63% 16-55 years, 48% female, 50% urban residents) completed the survey. Presenting concerns were arthritis flare (37%), chest pain (15%), injury (12%) and infection (11%). Of all visits, 29% of persons proceeded directly to the ED, 35% attempted accessing ambulatory care first and 32% were 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. Only 26% of patients were asked to follow up with a rheumatologist of which 38% were unable to do so in the time frame suggested. 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 IA patients 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 IA patients.

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.

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.

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.

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.

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.

Ten-Year Trends in Lithium Prescribing in Alberta, Canada.

AIMS: Despite lithium's clinical efficacy, it is commonly thought that its use is declining. The objective of this study is to describe the new and prevalent lithium users as well as rates of discontinuation of lithium use over a 10-year period. METHODS: This study used provincial administrative health data from Alberta, Canada between January 1, 2009 and December 31, 2018. Lithium prescriptions were identified within the Pharmaceutical Information Network database. Total and subgroup specific frequencies of new and prevalent lithium use were determined over the 10-year study period. Lithium discontinuation was also estimated through survival analysis. RESULTS: Between the calendar years of 2009 and 2018, 580,873 lithium prescriptions were dispensed in Alberta to 14,008 patients. The total number of new and prevalent lithium users appears to be decreasing over the 10-year timeframe, although the decline may have stopped or reversed in the latter years of the study period. Prevalent use of lithium was lowest among individuals between the ages of 18-24 years while the highest number of prevalent users were in the 50-64 age group, particularly among females. New lithium use was lowest amongst those 65 years and older. More than 60% (8,636) of patients prescribed lithium, discontinued use during the study timeframe. Lithium users between ages of 18-24 years were at the highest risk of discontinuations. CONCLUSIONS: Rather than a general decline in prescribing, trends in lithium use are dependent on age and sex. Further, the period soon after lithium initiation appears to be a key time period in which many lithium trials are abandoned. Detailed studies using primary data collection are needed to confirm and further explore these findings. These population-based results not only confirm a decline in lithium use, but also suggest that this may have stopped or even reversed. Population-based data on discontinuation pinpoint the period soon after initiation as the time when trials are most often discontinued.

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study.

Background: Updates to the Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access emphasize the "right access, in the right patient, at the right time, for the right reasons." Although this implies a collaborative approach, little is known about how patients, their caregivers, and health care providers engage in vascular access (VA) decision-making. Objective: To explore how the perspectives of patients receiving hemodialysis, their caregivers, and hemodialysis care team align and diverge in relation to VA selection. Design: Qualitative descriptive study. Setting: Five outpatient hemodialysis centers in Calgary, Alberta. Participants: Our purposive sample included 19 patients receiving maintenance hemodialysis, 2 caregivers, and 21 health care providers (7 hemodialysis nurses, 6 VA nurses, and 8 nephrologists). Methods: We conducted semi-structured interviews with consenting participants. Using an inductive thematic analysis approach, we coded transcripts in duplicate and characterized themes addressing our research objective. Results: While participants across roles shared some perspectives related to VA decision-making, we identified areas where views diverged. Areas of alignment included (1) optimizing patient preparedness-acknowledging decisional readiness and timing, and (2) value placed on trusting relationships with the kidney care team-respecting decisional autonomy with guidance. Perspectives diverged in the following aspects: (1) differing VA priorities and preferences-patients' emphasis on minimizing disruptions to normalcy contrasted with providers' preferences for fistulas and optimizing biomedical parameters of dialysis; (2) influence of personal and peer experience-patients preferred pragmatic, experiential knowledge, whereas providers emphasized informational credibility; and (3) endpoints for VA review-reassessment of VA decisions was prompted by access dissatisfaction for patients and a medical imperative to achieve a functioning access for health care providers. Limitations: Participation was limited to individuals comfortable communicating in English and from urban, in-center hemodialysis units. Few informal caregivers of people receiving hemodialysis and younger patients participated in this study. Conclusions: Although patients, caregivers, and healthcare providers share perspectives on important aspects of VA decisions, conflicting priorities and preferences may impact the decisional outcome. Findings highlight opportunities to bridge knowledge and readiness gaps and integrate shared decision-making in the VA selection process.

Contexte: Les mises à jour des lignes directrices de pratiques cliniques en matière d'accès vasculaire de la KDOQI (Kidney Disease Outcomes Quality Initiative) insistent sur la création « du bon accès, à la bonne personne, au bon moment et pour les bonnes raisons ¼. Ces recommandations sous-entendent une approche collaborative, mais la façon dont les patients, leurs soignants et les prestataires de soins de santé participent à la prise de décision sur l'accès vasculaire (AV) demeure mal connue. Objectif: Explorer les accords et les divergences dans les points de vue des patients sous hémodialyse, leurs soignants et leur équipe de soins relativement à la sélection de l'AV. Conception: Étude qualitative et descriptive. Cadre: Cinq centres d'hémodialyse ambulatoire à Calgary (Alberta). Sujets: Notre échantillon choisi à dessein était composé de 19 patients sous hémodialyse d'entretien, 2 soignants et 21 prestataires de soins de santé (7 infirmières en hémodialyse, 6 infirmières en AV et 8 néphrologues). Méthodologie: Nous avons mené des entrevues semi-structurées auprès des participants consentants. Une approche d'analyse thématique inductive a été employée pour coder les transcriptions en double et caractériser les thèmes répondant à l'objectif de recherche. Résultats: Certains points de vue sur la prise de décision en matière d'AV étaient partagés par tous les participants, mais nous avons identifié quelques domaines de divergence. Les participants s'entendaient sur : 1) l'optimisation de la préparation des patients ­ reconnaître l'état de préparation et le moment de prendre la décision; et 2) la valeur accordée aux relations de confiance avec l'équipe de soins rénaux ­ respecter l'autonomie décisionnelle après conseils. Les points de vue divergeaient sur : 1) les priorités et préférences à l'égard de l'AV ­ l'accent mis par les patients sur la minimisation des perturbations de la vie courante contrastait avec les préférences des prestataires de soins pour les fistules et l'optimisation des paramètres biomédicaux de la dialyse; 2) l'influence de l'expérience personnelle et des pairs ­ les patients préféraient des connaissances pragmatiques et expérientielles, tandis que les prestataires de soins mettaient l'accent sur la crédibilité de l'information; et 3) les critères d'évaluation de l'AV ­ la réévaluation du choix de l'AV est motivée par l'insatisfaction des patients à l'égard de l'accès et, du côté des prestataires de soins, par l'impératif médical de parvenir à un accès fonctionnel. Limites: Seules les personnes fréquentant une unité d'hémodialyse en centre urbain et à l'aise de communiquer en anglais ont pu participer. Les participants comptaient peu de patients plus jeunes et de soignants informels de personnes sous hémodialyse. Conclusion: Bien que les patients, les soignants et les prestataires de soins de santé s'entendent sur certains aspects importants de la décision concernant l'AV, celle-ci pourrait être influencée par des priorités et préférences contradictoires. Nos résultats mettent en évidence des occasions d'intégrer la prise de décision partagée dans le processus de sélection d'un AV et de combler les lacunes dans les connaissances et la préparation des patients.

Impaired Renal Function and Major Cardiovascular Events in Young Adults.

BACKGROUND: Cardiovascular (CV) disease in young adults (aged 18-39 years) is on the rise. Whether subclinical reductions in kidney function (ie, estimated glomerular filtration rate [eGFR] above the current threshold for chronic kidney disease but below age-expected values) are associated with elevated CV risk is unknown. OBJECTIVES: The goal of this study was to examine age-specific associations of subclinical eGFR reductions in young adults with major adverse cardiovascular events (MACEs) and MACE plus heart failure (MACE+). METHODS: A retrospective cohort study of 8.7 million individuals (3.6 million aged 18-39 years) was constructed using linked provincial health care data sets from Ontario, Canada (January 2008-March 2021). Cox models were used to examine the association of categorized eGFR (50-120 mL/min/1.73 m2) with MACE (first of CV mortality, acute coronary syndrome, and ischemic stroke) and MACE+, stratified according to age (18-39, 40-49, and 50-65 years). RESULTS: In the study cohort (mean age 41.3 years; mean eGFR 104.2 mL/min/1.73 m2; median follow-up 9.2 years), a stepwise increase in the relative risk of MACE and MACE+ was observed as early as eGFR <80 mL/min/1.73 m2 in young adults (eg, for MACE, at eGFR 70-79 mL/min/1.73 m2, ages 18-30 years: 2.37 events per 1,000 person years [HR: 1.31; 95% CI: 1.27-1.40]; ages 40-49 years: 6.26 events per 1,000 person years [HR: 1.09; 95% CI: 1.06-1.12]; ages 50-65 years: 14.9 events per 1,000 person years [HR: 1.07; 95% CI: 1.05-1.08]). Results persisted for each MACE component and in additional analyses (stratifying according to past CV disease, accounting for albuminuria at index, and using repeated eGFR measures). CONCLUSIONS: In young adults, eGFR below age-expected values were associated with an elevated risk for MACE and MACE+, warranting age-appropriate risk stratification, proactive monitoring, and timely intervention.

Priorities for peer support delivery among adults living with chronic kidney disease: a patient-oriented consensus workshop.

BACKGROUND: Peer support can address the informational and emotional needs of people living with chronic kidney disease (CKD) and enable self-management. We aimed to identify preferences and priorities for content, format and processes of peer support delivery for patients with non-dialysis CKD and their loved ones. METHODS: Using a patient-oriented research approach, we conducted a half-day, virtual consensus workshop with stakeholder participants from across Canada, including patients, caregivers, peer mentors and clinicians. Using personas (fictional characters), participants discussed and voted on preferences for delivery of peer support across format, content and process categories. We analyzed transcripts from small- and large-group discussions inductively using content analysis. RESULTS: Twenty-one stakeholders, including 9 patients and 4 caregivers, participated in the workshop. In the voting exercise on format, participants prioritized peer mentor matching, programming for both patients and caregivers, and flexible scheduling. For content, participants prioritized informational and emotional support focus, and for process, they prioritized leveraging kidney care programs and alternative sources (e.g., social media) for promotion and referral. Analysis of workshop transcripts complemented prioritization results and emphasized tailoring of peer support delivery to accommodate the diversity of people living with CKD and their support needs. This concept was elaborated in 3 themes, namely alignment of program features with needs, inclusive peer support options and multiple access points. INTERPRETATION: We identified preferences for peer support delivery for people living with CKD and underscore the importance of tailored, flexible programming in this context. Findings could be used to develop, adapt or study CKD-focused peer support interventions.

Storytelling for impact: the creation of a storytelling program for patient partners in research.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners, which include patients, family members, caregivers and organ donors, share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of driving change in the healthcare system. However, a growing number of patient partners are asked to 'share their story' within health care and research settings without adequate support to do so. This may ultimately widen, rather than close, the gap between healthcare practitioners and people affected by chronic disease in this new era of patient and public involvement in research. To better support patient partners with storytelling in the context of a patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network adapted an existing in-person storytelling workshop for patient educators within a hospital setting. The result is a 6-week virtual program called Storytelling for Impact, which guides patients, family members, caregivers and organ donors in developing impactful stories and sharing them at health care and research events, e.g., conferences. The online series of synchronous workshops is co-facilitated by story coaches, who are program alumni and Can-SOLVE CKD staff with trained storytelling experience. Each story follows a structure that includes a call to action, which aims to positively impact the priority-setting and delivery of care and research in Canada. The program has been a transformational process for many who have completed it, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As result, we have also created an asynchronous online program that can be used by other interested parties outside our network. Patient partners who share their stories can be powerful mediators for inspiring changes in the health care and research landscape, with adequate structured support. We describe two novel programs to support patient partners in impactful storytelling, which are applicable across all health research disciplines. Additional resources are required for sustainability and scale up of training, by having alumni train future storytellers.

Storytelling is a powerful means to evoke empathy and understanding among people. When patient partners share their stories with health professionals, this can prompt listeners to reflect on their practice and consider new ways of improving the healthcare system. However, as a growing number of patient partners are asked to 'share their story' within health care and research settings, there is often not enough tools and resources to support them in preparing their stories in a way that will be impactful for the audience members. Our kidney research network sought to create a novel in-person storytelling program to address this gap within our health research context. The result is a 6-week program called Storytelling for Impact, which guides patient partners­which includes patients, family members, caregivers and organ donors­in developing impactful stories and sharing them in a formal setting. The program is led by story coaches, who are patient partners and staff with trained storytelling experience. Participants are encouraged to include a call to action in their story, which aims to outline clear ways in which health professionals can facilitate positive change in health research or care. Many participants have described the program as transformational, and numerous other health organizations have expressed interest in sharing this tool with their own patient partners. As a result, we have also created a second online program that can be used by other interested parties outside our network. This paper highlights the adaptation process, content, participant feedback and next steps for the program.

Associations between modest reductions in kidney function and adverse outcomes in young adults: retrospective, population based cohort study.

OBJECTIVE: To study age specific associations of modest reductions in estimated glomerular filtration rate (eGFR) with adverse outcomes. DESIGN: Retrospective, population based cohort study. SETTING: Linked healthcare administrative datasets in Ontario, Canada. PARTICIPANTS: Adult residents (18-65 years) with at least one outpatient eGFR value (categorized in 10 unit increments from 50 mL/min/1.73m2 to >120 mL/min/1.73m2), with no history of kidney disease. MAIN OUTCOME MEASURES: eGFRs and hazard ratios of composite adverse outcome (all cause mortality, any cardiovascular event, and kidney failure) stratified by age (18-39 years, 40-49 years, and 50-65 years), and relative to age specific eGFR referents (100-110 mL/min/1.73m2) for ages 18-39 years, 90-100 for 40-49 years, 80-90 for 50-65 years). RESULTS: From 1 January 2008 to 31 March 2021, among 8 703 871 adults (mean age 41.3 (standard deviation 13.6) years; mean index eGFR 104.2 mL/min/1.73m2 (standard deviation 16.1); median follow-up 9.2 years (interquartile range 5.7-11.4)), modestly reduced eGFR measurements specific to age were recorded in 18.0% of those aged 18-39, 18.8% in those aged 40-49, and 17.0% in those aged 50-65. In comparison with age specific referents, adverse outcomes were consistently higher by hazard ratio and incidence for ages 18-39 compared with older groups across all eGFR categories. For modest reductions (eGFR 70-80 mL/min/1.73m2), the hazard ratio for ages 18-39 years was 1.42 (95% confidence interval 1.35 to 1.49), 4.39 per 1000 person years; for ages 40-49 years was 1.13 (1.10 to 1.16), 9.61 per 1000 person years; and for ages 50-65 years was 1.08 (1.07 to 1.09), 23.4 per 1000 person years. Results persisted for each individual outcome and in many sensitivity analyses. CONCLUSIONS: Modest eGFR reductions were consistently associated with higher rates of adverse outcomes. Higher relative hazards were most prominent and occurred as early as eGFR <80 mL/min/1.73m2 in younger adults, compared with older groups. These findings suggest a role for more frequent monitoring of kidney function in younger adults to identify individuals at risk to prevent chronic kidney disease and its complications.

The dynamic nature of patient engagement within a Canadian patient-oriented kidney health research network: Perspectives of researchers and patient partners.

INTRODUCTION: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a pan-Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach. METHODS: To capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach. RESULTS: We included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use). CONCLUSIONS: Our findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient-oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network. PATIENT OR PUBLIC CONTRIBUTION: This project was conceived in collaboration with a Can-SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co-designed the study's protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings.

"You need a team": perspectives on interdisciplinary symptom management using patient-reported outcome measures in hemodialysis care-a qualitative study.

BACKGROUND: Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients' perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients' and clinicians' perspectives on the role of PROMs in supporting interdisciplinary symptom management. METHODS: We employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion. RESULTS: Thirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms ("You need a team", conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence). CONCLUSIONS: We found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.

People with kidney failure receiving hemodialysis are faced with complex symptoms that impact their day-to-day functioning and quality of life. Patient-reported outcome measures (PROMs) are tools used by patients to directly communicate symptoms to their care team and guide symptom-focused care. Little is known about how PROMs could be integrated into the team-based care models of outpatient hemodialysis centres. In this study, we conducted interviews with people receiving hemodialysis and their clinicians about their perspectives on how PROMs could support interdisciplinary symptom management (i.e., integration of expertise to achieve common management goals). Participants described how the interrelatedness of symptoms was well suited to an integrated care approach and how PROMs enhanced communication and access to information across team members. In cases where symptoms persisted despite appropriate treatment, patients and clinicians explained how PROMs served as a tool to set realistic goals and reshape illness perception. Findings from this study suggest that access to resources, role flexibility, and established relationships within hemodialysis centres are important for sustaining PROM use in this setting.

Risk factors for suicidal ideation in a chronic illness.

Suicide is an urgent concern for people with chronic illnesses, particularly for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Prior work has examined suicide risk in this illness, but few studies have examined specific risk factors. This study uses binary logistic regression to identify physical, social, and demographic risk and protective factors for suicidal ideation in ME/CFS (N = 559). The results indicate sleep-related symptoms, stigma, disability status, physical functioning, and marital status as risk factors for suicidal ideation in this group. These findings highlight the importance of education, de-stigmatization, and the search for effective disease-modifying treatments for ME/CFS.

Sex differences in COVID-19 symptoms and outcomes in people with kidney failure treated with dialysis: a prospective cohort study.

BACKGROUND: People with kidney failure treated with dialysis are at increased risk of SARS-CoV-2 infection, and severe COVID-19 outcomes such as hospitalization and death. Though there are well-defined sex differences in outcomes for the general population with COVID-19, we do not know whether this translates into kidney failure populations. We aimed to estimate the differences in COVID-19 symptoms and clinical outcomes between males and females treated with maintenance dialysis. METHODS: In this prospective observational cohort study, we included adults treated with maintenance dialysis in Southern Alberta, Canada that tested positive for COVID-19 between March 2020 and February 2022. We examined the association between sex (dichotomized as male and female) with COVID-19 symptoms including fever, cough, malaise, shortness of breath, muscle joints/aches, nausea and/or vomiting, loss of appetite, diarrhea, headache, sore throat, and loss of smell/taste using chi-square or Fisher's exact tests. Secondary outcomes included 30-day hospitalization, ICU admission, and death. RESULTS: Of 1,329 cohort participants, 246 (18.5%) tested positive for SARS-CoV-2 and were included in our study, including 95 females (39%). Of 207 participants with symptoms assessed, females had less frequent fever (p = 0.003), and more nausea or vomiting (p = 0.003) compared to males, after correction for multiple testing. Males exhibited no symptoms 25% of the time, compared with 10% of females (p = 0.01, not significant when corrected for multiple testing). We did not identify statistically significant differences in clinical outcomes between the sexes, though vaccinated patients had lower odds of hospitalization. CONCLUSIONS: Sex differences in COVID-19 symptoms were identified in a cohort of patients treated with maintenance dialysis, which may inform sex-specific screening strategies in dialysis units. Further work is necessary to examine mechanisms for identified sex differences.

Patient and Clinician Perspectives on Shared Decision Making in Vascular Access Selection: A Qualitative Study.

RATIONALE & OBJECTIVE: Collaborative approaches to vascular access selection are being increasingly encouraged to elicit patients' preferences and priorities where no unequivocally superior choice exists. We explored how patients, their caregivers, and clinicians integrate principles of shared decision making when engaging in vascular access discussions. STUDY DESIGN: Qualitative description. SETTING & PARTICIPANTS: Semistructured interviews with a purposive sample of patients, their caregivers, and clinicians from outpatient hemodialysis programs in Alberta, Canada. ANALYTICAL APPROACH: We used a thematic analysis approach to inductively code transcripts and generate themes to capture key concepts related to vascular access shared decision making across participant roles. RESULTS: 42 individuals (19 patients, 2 caregivers, 21 clinicians) participated in this study. Participants identified how access-related decisions follow a series of major decisions about kidney replacement therapy and care goals that influence vascular access preferences and choice. Vascular access shared decision making was strengthened through integration of vascular access selection with dialysis-related decisions and timely, tailored, and balanced exchange of information between patients and their care team. Participants described how opportunities to revisit the vascular access decision before and after dialysis initiation helped prepare patients for their access and encouraged ongoing alignment between patients' care priorities and treatment plans. Where shared decision making was undermined, hemodialysis via a catheter ensued as the most readily available vascular access option. LIMITATIONS: Our study was limited to patients and clinicians from hemodialysis care settings and included few caregiver participants. CONCLUSIONS: Findings suggest that earlier, or upstream, decisions about kidney replacement therapies influence how and when vascular access decisions are made. Repeated vascular access discussions that are integrated with other higher-level decisions are needed to promote vascular access shared decision making and preparedness.

The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers.

Background: Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis. Objective: We aimed to explore the experiences of children with nephrotic syndrome and their caregivers in their search of a nephrotic syndrome diagnosis. Design: An exploratory, qualitative descriptive study design. Setting: The Alberta Children's Hospital outpatient nephrology program in Calgary, Alberta, Canada. Sample: Children aged 9 to 18 years with steroid-sensitive nephrotic syndrome and their caregivers. Methods: We undertook semi-structured interviews with children (alone or with a caregiver present) and their caregivers using a question guide suitable to their age and role. We used a thematic analysis approach to inductively code the data and characterize themes related to our research question. Results: Participants included 10 children aged 9 to 18 years (6 boys and 4 girls) and 18 caregivers (8 men and 10 women). We characterized 3 themes related to participants' experiences in search of a diagnosis of nephrotic syndrome: (1) unexpected and distressing symptom onset, (2) elusiveness of a diagnosis, and (3) encountering a diagnosis. Children with nephrotic syndrome and their caregivers described experiencing initial anxiety due to their unusual and unexpected symptom onset and lack of awareness about the disease. Perceived diagnostic delays and incorrect diagnosis early in the course of the disease contributed to multiple consultations with a variety of care providers. Overall, participants expressed a desire to move past their diagnosis, learn about nephrotic syndrome, and engage in their treatment plans. Limitations: The views expressed by participants may not reflect those of individuals from other settings. The time elapsed since participants' nephrotic syndrome diagnosis may have influenced their recall of events and reactions to this diagnosis. Conclusions: In characterizing the diagnostic experiences of children and their caregivers, our study provides insight into how patients with nephrotic syndrome and their caregivers can be supported by the healthcare team along this journey. Focused strategies to increase awareness and understanding of nephrotic syndrome among healthcare providers are needed to improve patients' and families' diagnostic experiences.

Contexte: Le syndrome néphrotique infantile est une néphropathie rare caractérisée par l'apparition soudaine d'un œdème, d'une importante protéinurie et d'une hypoalbuminémie. La trajectoire jusqu'au diagnostic d'une maladie rare peut être longue et difficile. Objectif: Nous voulions sonder l'expérience des enfants atteints du syndrome néphrotique et celles de leurs soignants pendant le processus d'un diagnostic de syndrome néphrotique. Conception: Étude descriptive exploratoire et qualitative. Cadre: Le program de néphrologie ambulatoire du Alberta Children's Hospital de Calgary (Alberta) au Canada. Participants: Des enfants (9 à 18 ans) atteints du syndrome néphrotique sensible aux stéroïdes, et leurs soignants. Méthodologie: Un questionnaire adapté selon l'âge et le rôle a servi de guide pour les entrevues semi-structurées menées avec les enfants (seuls ou en présence d'un soignant) et leurs soignants. Nous avons utilisé une approche d'analyze thématique pour coder les données de façon inductive et caractériser les thèmes liés à notre question de recherche. Résultats: L'étude a inclus 10 enfants âgés de 9 à 18 ans (6 garçons, 4 filles) et 18 soignants (8 hommes, 10 femmes). Trois thèmes liés à l'expérience des participants dans le processus de recherche d'un diagnostic de syndrome néphrotique ont été caractérisés: (a) l'apparition de symptômes inattendus et affligeants (b) le caractère insaisissable du diagnostic, et (c) l'annonce du diagnostic. Les patients et les soignants ont mentionné avoir d'abord ressenti de l'anxiété en raison de l'apparition soudaine de symptômes inhabituels et du manque de sensibilisation à la maladie. Des retards perçus dans le diagnostic et les erreurs de diagnostic dans les stades précoces ont entraîné de nombreuses consultations auprès de divers fournisseurs de soins. Dans l'ensemble, les participants ont exprimé leur désir de dépasser le diagnostic, d'en apprendre davantage sur le syndrome néphrotique et de s'engager dans le plan de traitement. Limites: Les avis exprimés par les participants pourraient ne pas refléter l'expérience d'autres individus dans d'autres contextes. Le temps écoulé depuis le diagnostic du syndrome néphrotique chez les participants peut avoir influencé leur rappel des événements et les réactions mentionnées face à ce diagnostic. Conclusion: En caractérisant les expériences de diagnostic des enfants et de leurs soignants, notre étude fournit un aperçu de la façon dont les patients atteints du syndrome néphrotique et leurs soignants pourraient être soutenus par l'équipe soignante tout au long de leur parcours. Des stratégies ciblées visant à accroître la sensibilisation au syndrome néphrotique et sa compréhension chez les prestataires de soins de santé sont nécessaires pour améliorer l'expérience des patients et des familles face au diagnostic.

A Qualitative Content Analysis of Comments on Press Articles on Deemed Consent for Organ Donation in Canada.

BACKGROUND AND OBJECTIVES: In 2019, two Canadian provinces became the first jurisdictions in North America to pass deemed consent legislation to increase deceased organ donation and transplantation rates. We sought to explore the perspectives of the deemed consent legislation for organ donation in Canada from the viewpoint of individuals commenting on press articles. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In this qualitative descriptive study, we extracted public comments regarding deemed consent from online articles published by four major Canadian news outlets between January 2019 and July 2020. A total of 4357 comments were extracted from 35 eligible news articles. Comments were independently analyzed by two research team members using a conventional content analysis approach. RESULTS: Commenters' perceptions of the deemed consent legislation for organ donation in Canada predominantly fit within three organizational groups: perceived positive implications of the bills, perceived negative implications of the bills, and key considerations. Three themes emerged within each group that summarized perspectives of the proposed legislation. Themes regarding the perceived positive implications of the bills included majority rules, societal effect, and prioritizing donation. Themes regarding the perceived negative implications of the bills were a right to choose, the potential for abuse and errors, and a possible slippery slope. Improving government transparency and communication, clarifying questions and addressing concerns, and providing evidence for the bills were identified as key considerations. CONCLUSIONS: If deemed consent legislation is meant to increase organ donation and transplantation, addressing public concerns will be important to ensure successful implementation.

Association of Albuminuria and Regression of Chronic Kidney Disease in Adults With Newly Diagnosed Moderate to Severe Chronic Kidney Disease.

Importance: People with chronic kidney disease (CKD) are risk-stratified for adverse events based on estimated glomerular filtration rate (eGFR) and albuminuria level. CKD has often a favorable course (CKD regression) regardless of eGFR. Determining whether lower albuminuria is associated with CKD regression may have implications on CKD management. Objective: To assess the 5-year probability of CKD regression across albuminuria categories accounting for the competing risks of CKD progression and death in people with newly diagnosed CKD and the association between albuminuria level and CKD regression. Design, Setting, and Participants: This population-based cohort study used administrative and laboratory data from Alberta, Canada, for adults with incident moderate to severe CKD (defined as sustained eGFR of 15-44 mL/min/1.73 m2 for >90 days), between April 1, 2008, and March 31, 2017, and albuminuria measures before cohort entry. Data analysis occurred in January to June 2022. Exposure: Albuminuria categories were defined by albumin to creatinine ratios (ACRs): A1 (ACR, <3 mg/mmol), A2 (ACR, 3-29 mg/mmol), A3<60 (ACR, 30-59 mg/mmol), and A3≥60 (ACR, ≥60 mg/mmol). Main Outcomes and Measures: The main outcome was time to the earliest of CKD regression or progression (sustained change in CKD stage for >3 months and ≥25% increase or decrease in eGFR from baseline or kidney failure, respectively), death, or censoring (outmigration or study end date: March 31, 2019). Cumulative incidence functions were used to estimate absolute risks, and cause-specific Cox models were used to assess the association between albuminuria and CKD regression, accounting for age, sex, eGFR, comorbidities, and health services use indicators. Results: Of 58 004 people with moderate to severe CKD (mean [SD] age, 77 [12] years; 31 725 [55%] women), 35 360 had A1 albuminuria (61%), 15 597 had A2 albuminuria (27%), 1527 had A3<60 albuminuria (3%), and 5520 had A3≥60 albuminuria (10%). Five-year probability of regression was highest with A1 (22.6%), followed by A2 (16.5%), and A3<60 (11.6%) and lowest with A3≥60 (5.3%). Using A1 albuminuria as the reference group, the hazard of regression was highest for A2 (hazard ratio [HR], 0.75; 95% CI, 0.72-0.79), then A3<60 (HR, 0.47; 95% CI, 0.40-0.54), and lowest for A3≥60 (HR, 0.27; 95% CI, 0.24-0.30). Conclusions and Relevance: In this cohort study of people with moderate to severe CKD, albuminuria levels were inversely associated with CKD regression. These findings extend the key prognostic role of albuminuria, offering novel opportunities to discuss both favorable and adverse outcomes in people with CKD and inform CKD management.