Family and emergency physicians' knowledge and attitudes toward organ donation and deemed consent: Human Organ and Tissue Donation Act in Nova Scotia.

OBJECTIVE: To understand Nova Scotian family physicians' and emergency department (ED) physicians' knowledge of, attitudes about, and experience with organ donation and transplantation in the context of the Human Organ and Tissue Donation Act (HOTDA). DESIGN: An electronic, self-administered survey. SETTING: Nova Scotia. PARTICIPANTS: All family physicians and ED physicians practising in Nova Scotia. MAIN OUTCOME MEASURES: Demographic characteristics, experience with organ donation and transplantation, knowledge about organ donation and HOTDA, attitudes toward organ donation and HOTDA, and opportunities for and barriers to the implementation of the HOTDA in clinical practice. Survey results were analyzed using descriptive statistics. RESULTS: Overall, 211 family physicians and 73 ED physicians responded to the survey. Most respondents had favourable attitudes around organ donation and most supported a deemed consent model. Nearly three-quarters of family physicians indicated they have a conversation around organ donation only if it is initiated by the patient. In the ED setting, the most common barriers to organ donation and deemed consent were lack of familiarity with the organ donation referral process, refusal of permission from families, and unknown wishes of the deceased. CONCLUSION: Family physicians and ED physicians had positive attitudes toward organ donation, including high support for a deemed consent model. However, specific knowledge gaps and training topics were identified that should be addressed within the context of this model.

Early experiences of deemed consent legislation for organ donation in Nova Scotia: a qualitative study.

PURPOSE: In 2021, Nova Scotia, Canada, became the first jurisdiction in North America to adopt a deemed consent organ donation system under its revised Human Organ and Tissue Donation Act. This study sought to understand the early experiences of program staff and clinicians involved in implementing this legislation. METHODS: We conducted semistructured interviews with members of the provincial organ donation program and intensive care unit and emergency department clinicians (n = 14). Two investigators coded transcripts of interviews, then categorized the coded data into themes. RESULTS: We identified four key themes: 1) legislation has limited impact on daily practice; 2) legislation does not address existing barriers; 3) legislation aids conversations with donor families; and 4) legislation should provide more autonomy to patients and families, not less. CONCLUSION: Deemed consent legislation had limited impact on clinician's day-to-day practices, because of lack of infrastructure changes and infrequent donation opportunities. Nevertheless, participants felt the introduction of deemed consent in Nova Scotia eased conversations between families of potential donors and clinicians. These findings should be used to inform ongoing implementation of deemed consent and be considered by those contemplating similar legislative changes.

RéSUMé: OBJECTIF: En 2021, la Nouvelle-Écosse, au Canada, est devenue la première juridiction nord-américaine à adopter un système de don d'organes avec consentement présumé dans le cadre de sa version révisée de la Loi sur le don d'organes et de tissus humains. Cette étude visait à comprendre les premières expériences du personnel du programme et des clinicien·nes participant à la mise en œuvre de cette loi. MéTHODE: Nous avons mené des entrevues semi-structurées avec des membres du programme provincial de don d'organes, ainsi qu'avec des clinicien·nes de l'unité de soins intensifs et des services d'urgence (n = 14). Deux personnes de l'équipe de recherche ont codé les transcriptions des entrevues, puis ont classé les données codées en thèmes. RéSULTATS: Nous avons identifié quatre thèmes clés : 1) la législation a un impact limité sur la pratique quotidienne; 2) la législation ne s'attaque pas aux obstacles existants; 3) la législation facilite les conversations avec les familles des donneurs et donneuses; et 4) la législation devrait accorder plus d'autonomie aux patient·es et aux familles, et non moins. CONCLUSION: La législation sur la présomption de consentement a eu une incidence limitée sur les pratiques quotidiennes des cliniciennes et cliniciens, en raison du manque de changements à l'infrastructure et des possibilités de dons peu fréquentes. Néanmoins, les participant·es ont estimé que l'introduction du consentement présumé en Nouvelle-Écosse facilitait les conversations entre les familles des donneurs et donneuses potentiel·les et les clinicien·nes. Ces constatations devraient être utilisées pour éclairer la mise en œuvre continue de la présomption de consentement et être prises en compte par les autorités qui envisagent des modifications législatives similaires.

Development of the Nova Scotia Potential Donor Audit (PDA) Tool and 2020 Historic Performance Database: Lessons Learned From the First 1000 Medical Record Reviews.

Background: Legislation and accountability frameworks are key components of high-performing deceased-donation systems. In 2021, Nova Scotia (NS), Canada, became the first jurisdiction in North America to enact deemed consent legislation and concurrently implemented mandatory referral legislation similar to that found in other Canadian provinces. Frontline financial resources were provided by the government to support the development of program infrastructure, including implementation of means to evaluate system performance. Methods: The Organ Donation Program (ODP), in collaboration with other stakeholders, developed a Potential Donor Audit (PDA) tool and database for referral intake and manual performance audits. Medical record reviews of deaths in the year before legislative change were conducted to pilot and revise the PDA and evaluate missed donation opportunities. Results: The NS PDA was piloted on 1028 patient deaths. Of 518 patients (50.4%) who met clinical triggers for referral to the ODP, 72 (13.9%) were referred (86.1% missed referral rate). One hundred sixty-three patients met the NS definition of a potential donor; 53 (32.5%) were referred (110 missed potential donors). Referral consent rates reached 71.7% (n = 38 of 53 approaches). The actualized donation rate reported by Canadian Blood Services was 29.9 donors per million population (n = 34 donors). Discussion: We documented high rates of missed referrals and missed potential donors before the enactment of mandatory referral and deemed consent legislation. Conclusions: The ODP has intentionally broadened clinical criteria for referral to shift the responsibility of identifying medically suitable potential donors from bedside clinicians to organ donation specialists. Lessons learned from our experience developing a PDA include the importance of early involvement of multiple stakeholders and ongoing modification of fields and workflow based on data availability and utility for clinical, educational, research, and reporting purposes.

Development of a consortium to examine organ donation legislative and system reforms: A report from the LEADDR consortium.

In April 2019, the province of Nova Scotia became the first jurisdiction in North America to pass legislation that incorporated deemed consent for deceased organ donation. The reform included many other important updates, including the hierarchy for consent, enabled donor and recipient contact, and mandatory referral of potential deceased donors. Additionally, system reforms were implemented to improve the deceased donation system in Nova Scotia. A collection of national colleagues identified the magnitude of the opportunity to develop a comprehensive strategy to measure and evaluate the impact of the legislative and system reforms. This article describes the successful development of a consortium from both national and provincial jurisdictions that included experts from a variety of backgrounds and clinical and administrative disciplines. In describing the creation of this group, we hope to offer our case example as a model for the evaluation of other health system reforms from a multidisciplinary perspective.

Views of leaders in under-represented and equity-denied communities on organ and tissue donation in Nova Scotia, Canada, in light of the Human Organ and Tissue Donation Act: a qualitative descriptive study.

OBJECTIVE: To explore the views of underserved and equity-denied communities in Nova Scotia, Canada, regarding organ and tissue donation and deemed consent legislation. DESIGN: A qualitative descriptive study was undertaken, employing both interviews and focus groups. SETTING: The province of Nova Scotia, Canada-the first jurisdiction in North America to implement deemed consent legislation for organ and tissue donation. PARTICIPANTS: Leaders of African Nova Scotian, Lesbian, Gay, Bisexual, Trans, Queer, Two Spirit (LGBTQ2S+) and Faith-based communities (Islam and Judaism) were invited to participate (n=11). Leaders were defined as persons responsible for community organisations or in other leadership roles, and were purposively recruited by the research team. RESULTS: Through thematic analysis, four main themes were identified: (1) alignment with personal values as well as religious beliefs and perspectives; (2) trust and relationships, which need to be acknowledged and addressed in the context of deemed consent legislation; (3) cultural competence, which is essential to the roll-out of the new legislation and (4) communication and information to combat misconceptions and misinformation, facilitate informed decision-making, and mitigate conflict within families. CONCLUSIONS: Leaders of African Nova Scotian, LGBTQ2S+ and Faith-based communities in Nova Scotia are highly supportive of deemed consent legislation. Despite this, many issues exemplify the need for cultural competence at all levels. These findings should inform ongoing implementation of the legislation and other jurisdictions considering a deemed consent approach to organ and tissue donation.

Incidence of cardiovascular disease and mortality in childhood solid organ transplant recipients: a population-based study.

BACKGROUND: With improved survival among children after transplantation, our understanding of the risk for developing other comorbidities is improving, yet little is known about the long-term risk of cardiovascular events and mortality after solid organ transplantation. METHODS: In a cohort study using health administrative data, we compared cardiovascular events in children (n = 615) with liver, lung, kidney, small bowel, or multi-organ transplant at the Hospital for Sick Children, Toronto, Canada, with asthmatic children (n = 481,697) between 1996 and 2014. Outcomes included non-fatal cardiovascular events, cardiovascular death, all-cause mortality, and a composite of non-fatal and fatal cardiovascular events. Time-stratified Cox proportional hazards models were used. RESULTS: Among 615 children, 317 (52%) were recipients of kidneys, 253 (41%) of livers, and the remaining 45 (7%) had lung, small bowel, or multi-organ transplants. Median follow-up was 12.1 [7.2, 16.7] years. Non-fatal incident cardiovascular events were 34 times higher among solid organ transplant recipients than non-transplanted children (incidence rate ratio (IRR) 34.4, 95% CI: 25.5, 46.4). Among transplant recipients, the cumulative incidence of non-fatal and fatal cardiovascular events was 2.3% and 13.0%, 5 and 15 years after transplantation, respectively. CONCLUSIONS: Increased rate of cardiovascular events in children after transplantation highlights the need for surveillance during transition into adulthood and beyond. A higher resolution version of the Graphical abstract is available as Supplementary information.

Nurse knowledge and attitudes towards organ donation and deemed consent: the Human Organ and Tissue Donation Act in Nova Scotia.

PURPOSE: In April 2019, the Human Organ and Tissue Donation Act (HOTDA) in Nova Scotia was modified to incorporate a deemed consent model. In this study, we sought to understand intensive care unit (ICU) and emergency department (ED) nurses' knowledge of and confidence around organ donation and transplantation, experiences with organ donors and recipients, attitudes toward organ donation and deemed consent, and perceived opportunities and barriers to a deemed consent approach in view of the legislative change. METHODS: We sent an electronic, self-administered survey to all ICU and ED nurses in Nova Scotia. The survey queried respondents on their knowledge of, experience with, and attitudes around organ donation and HOTDA, and opportunities and barriers to the implementation of HOTDA in clinical practice. Survey results were analyzed using descriptive statistics. RESULTS: One-hundred and ninety-four nurses responded to the survey. Nearly all (98%) supported organ donation, with 86% having signed an organ donor card to donate organs and/or tissues after death. A considerable majority (89%) also supported the new legislation. Nevertheless, a minority of respondents (13%) believed that deemed consent legislation would be considered a violation of the general principles of freedom and autonomy. The three most identified topics for ongoing training were coordination of the donation process (70%), clinical management of donors (70%), and family issues in decision-making (70%). CONCLUSION: Intensive care unit and ED nurses had positive attitudes toward organ donation, including deemed consent model. The findings should inform educational initiatives in Nova Scotia and beyond to optimize organ donation processes and outcomes.

RéSUMé: OBJECTIF: En avril 2019, la Loi sur le don d'organes et de tissus humains (Human Organ and Tissue Donation Act ­ HOTDA) de la Nouvelle-Écosse a été modifiée pour intégrer un modèle de consentement présumé. Dans cette étude, nous avons cherché à comprendre les connaissances et l'aisance du personnel infirmier des unités de soins intensifs (USI) et des services d'urgence en matière de don et de transplantation d'organes, leurs expériences avec les donneurs et les receveurs d'organes, leurs attitudes à l'égard du don d'organes et du consentement présumé, ainsi que les occasions et les obstacles perçus à une approche de consentement présumé compte tenu de la modification législative. MéTHODE: Nous avons envoyé un sondage électronique auto-administré à tout le personnel infirmier des soins intensifs et des urgences de Nouvelle-Écosse. Le sondage a interrogé les répondant.e.s sur leurs connaissances, leur expérience et leurs attitudes à l'égard du don d'organes et de la HOTDA, ainsi que sur les occasions et les obstacles à la mise en œuvre de l'HOTDA dans la pratique clinique. Les réponses au sondage ont été analysées à l'aide de statistiques descriptives. RéSULTATS: Cent-quatre-vingt-quatorze infirmières et infirmiers ont répondu au questionnaire. Presque toutes les personnes ayant répondu (98 %) appuient le don d'organes, 86 % ayant signé une carte de don d'organes pour donner des organes et/ou des tissus après leur décès. Une majorité considérable (89 %) soutient également la nouvelle législation. Néanmoins, une minorité de répondant.e.s (13 %) estime que la législation sur la présomption de consentement serait considérée comme une violation des principes généraux de liberté et d'autonomie. Les trois sujets de formation continue les plus fréquemment mentionnés étaient la coordination du processus de don (70 %), la prise en charge clinique des donneurs et donneuses (70 %) et les questions familiales dans la prise de décision (70 %). CONCLUSION: Le personnel infirmier des soins intensifs et des urgences avait une attitude positive à l'égard du don d'organes, y compris du modèle de consentement présumé. Ces résultats devraient éclairer les initiatives éducatives en Nouvelle-Écosse et ailleurs afin d'optimiser les processus et les issues du don d'organes.

A Program of Research to Evaluate the Impact of Deceased Organ Donation Legislative Reform in Nova Scotia: The LEADDR Program.

BACKGROUND: This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world-notably Western Europe-it is uncertain how this practice will influence deceased donation practices and attitudes in Canada. METHODS: We describe a Health Canada funded program of research that will evaluate the implementation process and full impact of the deceased organ donation legislation and the health system transformation in Nova Scotia that includes opt-out consent. RESULTS: There is a need to evaluate the impact of these changes to inform not only Nova Scotia and Atlantic Canada, but also other provincial, national, and international stakeholders. CONCLUSIONS: We establish a rigorous academic framework that we will use to evaluate this significant health system transformation.

Prepregnancy renal function and risk of preterm birth and related outcomes.

BACKGROUND: Prepregnancy kidney dysfunction has been associated with preterm birth, which is the leading cause of neonatal morbidity and mortality; however, the relation is not well understood. We determined the risk of preterm birth in women with prepregnancy kidney dysfunction, defined using pregnancy-specific serum creatinine cut points. METHODS: This population-based cohort study in the province of Ontario, Canada, involved women aged 16 to 50 years who had a singleton birth between 2006 and 2016 and measurement of serum creatinine within 10 weeks preceding their estimated conception date. The exposure was abnormally elevated prepregnancy serum creatinine, defined as greater than the 95th percentile (> 77 µmol/L), a value derived from a population-based sample of women without known kidney disease who became pregnant soon after the measurement was obtained. The main outcome was any preterm birth from 23 to 36 weeks' gestation. Secondary outcomes included provider-initiated preterm birth before 37 weeks' gestation and spontaneous preterm birth before 37 weeks. RESULTS: Among 55 946 pregnancies, preterm birth before 37 weeks' gestation occurred in 3956 women (7.1%). The risk of preterm birth before 37 weeks was higher among women with prepregnancy creatinine above the 95th percentile, relative to those with prepregnancy creatinine at or below the 95th percentile (9.1% v. 7.0%; adjusted relative risk [RR] 1.23, 95% confidence interval [CI] 1.09 to 1.38). The effect was significant for provider-initiated preterm birth (adjusted RR 1.30, 95% CI 1.11 to 1.52) but not for spontaneous preterm birth (adjusted RR 1.12, 95% CI 0.91 to 1.37). INTERPRETATION: Given that prepregnancy kidney dysfunction conferred an increased risk of preterm birth, measurement of serum creatinine (a relatively inexpensive blood test) may form part of the assessment of risk for preterm birth among those planning pregnancy.

Interhospital Transfer and Outcomes in Patients with AKI: A Population-Based Cohort Study.

Background: Patients with AKI may require interhospital transfer to receive RRT. Interhospital transfer may lead to delays in therapy, resulting in poor patient outcomes. There is minimal data comparing outcomes among patients undergoing transfer for RRT versus those who receive RRT at the hospital to which they first present. Methods: We conducted a population-based cohort study of all adult patients (≥19 years) who received acute dialysis within 14 days of admission to an acute-care hospital between April 1, 2004 and March 31, 2015. The transferred group included all patients who presented to a hospital without a dialysis program and underwent interhospital transfer (with the start of dialysis ≤3 days of transfer and within 14 days of initial admission). All other patients were considered nontransferred. The primary outcome was time to 90-day all-cause mortality, adjusting for demographics, comorbidities, and measures of acute illness severity. We also assessed chronic dialysis dependence as a secondary outcome, using the Fine and Gray proportional hazards model to account for the competing risks of death. In a secondary post hoc analysis, we assessed these outcomes in a propensity score-matched cohort, matching on age, sex, and prior CKD status. Results: We identified 27,270 individuals initiating acute RRT within 14 days of a hospital admission, of whom 2113 underwent interhospital transfer. Interhospital transfer was associated with lower rate of mortality (adjusted hazard ratio [aHR], 0.90; 95% CI, 0.84 to 0.97). Chronic dialysis dependence was not significantly different between groups (aHR, 0.98; 95% CI, 0.91 to 1.06). In the propensity score-matched analysis, interhospital transfer remained associated with a lower risk of death (HR, 0.88; 95% CI, 0.80 to 0.96). Conclusions: Interhospital transfer for receipt of RRT does not confer higher mortality or worse kidney outcomes.

Incidence, Treatment, and Implications of Kidney Stones During Pregnancy: A Matched Population-Based Cohort Study.

Purpose: To determine the incidence of kidney stones in pregnancy, the risk of adverse birth outcomes, and treatment trends. Methods: We performed a population-based matched cohort study using Ontario's health care databases. All pregnancies in Ontario from 2004 to 2014 were identified. The study exposure was hospital admission, emergency room visit, or intervention for kidney stones during pregnancy. Each pregnancy with a stone was matched to up to six pregnancies without a stone based on age, region of residence, income quintile, year of cohort entry, prior births, and multibirths. The primary outcome was adverse birth outcome defined as preterm birth, low birth weight, or infant death. Secondary outcomes included premature rupture of membranes (PROM), pre-eclampsia, and cesarean section (C/S), as well as the type/frequency of intervention for stones in pregnancy. Logistic regression models, with generalized estimating equations, were used to assess any differences in study outcomes across groups. Results: Of 1.39 million pregnancies identified, there were 2863 pregnancies with stones (0.2%), which were matched with 17,171 pregnancies without stones. Pregnancies with stones had an increased risk for adverse birth outcome compared with matched pregnancies without stones (odds ratio [OR] 1.62, confidence interval [95% CI] 1.43-1.82, p < 0.0001). Pregnancies with stones also had a greater risk for pre-eclampsia (OR 1.42, 95% CI 1.02-1.99, p = 0.04) and C/S (OR 1.39, 95% CI 1.27-1.51, p < 0.0001), but not PROM. Twenty-six percent of pregnant patients admitted for a stone had an intervention, most commonly a stent or ureteroscopy. Conclusion: Our study demonstrated an increased risk of adverse birth outcomes in pregnancies with kidney stones. These results will be important for counseling pregnant patients with kidney stones and women of reproductive age who are at risk of developing stones.

Kidney disease and care among First Nations people with diabetes in Ontario: a population-based cohort study.

BACKGROUND: End-stage kidney disease is a serious complication of diabetes. We describe the prevalence of chronic kidney disease, prevalence and incidence of end-stage kidney disease and quality of care of early-stage chronic kidney disease for First Nations people with diabetes compared to other Ontarians with diabetes. METHODS: We conducted a retrospective cohort study in Ontario using linked administrative data at ICES. We included adults with incident diabetes between 1994 and 2014, and used laboratory values to identify kidney disease and quality indicators for care for early-stage disease. We compared measures in First Nations people to those in other people in Ontario, and used direct age and sex standardization. We used Cox proportional hazards regression to compare the incidence of end-stage kidney disease between groups. RESULTS: Our study included 21 968 First Nations people with diabetes. The age- and sex-standardized prevalence of chronic kidney disease was higher for First Nations people than for other Ontarians (20.7% v. 18.4%), as was the prevalence of end-stage kidney disease (2.9% v. 1.0%). The incidence of end-stage kidney disease was higher among First Nations people than among other people in Ontario (9.3 v. 4.7 events per 10 000 person-years; age- and sex-adjusted hazard ratio 2.23, 95% confidence interval 1.72-2.89). The 2 groups were similarly likely to receive recommended medications, but First Nations people were less likely to receive laboratory tests for their kidney disease. INTERPRETATION: Despite receiving similar quality of care for early-stage kidney disease, First Nations people with diabetes had higher rates of end-stage kidney disease than other Ontarians. Further research is needed to better understand contributing factors to help inform future interventions.

Elevated Risk of Cancer After Solid Organ Transplant in Childhood: A Population-based Cohort Study.

BACKGROUND: Cancer risk is elevated among adult transplant recipients, but there is limited data regarding long-term cancer risk and mortality in pediatric recipients. METHODS: We conducted a population-based retrospective cohort study in Ontario, Canada. We included pediatric recipients of solid organ transplants at the Hospital for Sick Children, Toronto, from 1991 to 2014, and compared rates of new cancers and cancer-specific mortality to nontransplanted Ontario children born in the same year. We constructed standard and time-dependent Cox proportional hazards models accounting for competing risk of death. RESULTS: A total of 951 recipients (kidney, n = 400; liver, n = 283; heart, n = 218; lung, n = 36; multiorgan/small bowel, n = 14) were compared with 5.3 million general population children. Mean (SD) age was 8.2 (6.4) years; 50% were male. Over a mean (SD) follow-up of 10.8 (7.1) years, cumulative incidence of cancer was 20% in recipients and 1.2% in the general population (incidence rate ratio, 32.9; 95% confidence interval [CI], 26.6-40.8). Risk was highest in the first year posttransplant (adjusted hazard ratio [aHR],176; 95% CI, 117-264), but remained elevated beyond 10 years (aHR, 10.8; 95% CI, 6.3-18.6). Lymphoproliferative disorders were predominant (77%); however, solid cancers (renal, sarcomas, genital, thyroid) were seen. Recipients of lung or multiorgan transplants were at highest risk. Cancer-specific mortality was also higher among recipients (HR, 93.1; 95% CI, 59.6-145.2). CONCLUSIONS: Childhood transplant recipients have a 30 times greater cancer incidence versus the general population. Further investigation is needed to guide screening strategies in this at-risk population.

Cultivating Innovative Pragmatic Cluster-Randomized Registry Trials Embedded in Hemodialysis Care: Workshop Proceedings From 2018.

Hemodialysis is a life-sustaining treatment for persons with kidney failure. However, those on hemodialysis still face a poor quality of life and a short life expectancy. High-quality research evidence from large randomized controlled trials is needed to identify interventions that improve the experiences, outcomes, and health care of persons receiving hemodialysis. With the support of the Canadian Institutes of Health Research and its Strategy for Patient-Oriented Research, the Innovative Clinical Trials in Hemodialysis Centers initiative brought together Canadian and international kidney researchers, patients, health care providers, and health administrators to participate in a workshop held in Toronto, Canada, on June 2 and 3, 2018. The workshop served to increase knowledge and awareness about the conduct of innovative, pragmatic, cluster-randomized registry trials embedded into routine hemodialysis care and provided an opportunity to discuss and build support for new trial ideas. The workshop content included structured presentations, facilitated group discussions, and expert panel feedback. Partnerships and promising trial ideas borne out of the workshop will continue to be developed to support the implementation of future large-scale trials.

L'hémodialyse constitue un traitement essentiel au maintien de la vie pour les personnes atteintes d'insuffisance rénale. Les patients hémodialysés voient cependant leur qualité et leur espérance de vie réduites. Des données de recherches probantes, provenant de vastes essais cliniques contrôlés à répartition aléatoire, sont nécessaires pour améliorer l'expérience, les résultats et les soins des patients hémodialysés. Grâce au soutien des Instituts de recherche en santé du Canada (IRSC) et de leur Stratégie de recherche axée sur le patient (SRAP), l'initiative sur les essais cliniques novateurs (ECN) en centres d'hémodialyse a réuni divers intervenants en santé rénale (chercheurs, patients, fournisseurs de soins et administrateurs), du Canada et de partout dans le monde, lors d'un colloque qui s'est tenu à Toronto les 2 et 3 juin 2018. Ce colloque a permis d'accroître la sensibilisation et les connaissances sur la conduite d'essais cliniques novateurs, répartis en grappes, pragmatiques et intégrés aux soins d'hémodialyse de routine. Cette rencontre a également fourni une occasion de discuter de nouvelles idées d'essais cliniques et de susciter les appuis nécessaires à leur réalisation. Le colloque s'est déroulé sous forme de présentations structurées, de discussions animées en groupe et de rétroaction de la part d'un comité d'experts. Les idées de recherche prometteuses et les partenariats issus de ce colloque continueront d'être développés pour soutenir la réalisation d'essais cliniques futurs de grande envergure.

Home Palliative Service Utilization and Care Trajectory Among Ontario Residents Dying on Chronic Dialysis.

BACKGROUND: Many patients who receive chronic hemodialysis have a limited life expectancy comparable to that of patients with metastatic cancer. However, patterns of home palliative care use among patients receiving hemodialysis are unknown. OBJECTIVES: We aimed to undertake a current-state analysis to inform measurement and quality improvement in palliative service use in Ontario. METHODS: We conducted a descriptive study of outcomes and home palliative care use by Ontario residents maintained on chronic dialysis using multiple provincial healthcare datasets. The period of study was the final year of life, for those died between January 2010 and December 2014. RESULTS: We identified 9611 patients meeting inclusion criteria. At death, patients were (median [Q1, Q3] or %): 75 (66, 82) years old, on dialysis for 3.0 (1.0-6.0) years, 41% were women, 65% had diabetes, 29.6% had dementia, and 13.9% had high-impact neoplasms, and 19.9% had discontinued dialysis within 30 days of death. During the last year of life, 13.1% received ⩾1 home palliative services. Compared with patients who had no palliative services, those who received home palliative care visits had fewer emergency department and intensive care unit visits in the last 30 days of life, more deaths at home (17.1 vs 1.4%), and a lower frequency of deaths with an associated intensive care unit stay (8.1 vs 37.8%). CONCLUSIONS: Only a small proportion of patients receiving dialysis in Ontario received support through the home palliative care system. There appears to be an opportunity to improve palliative care support in parallel with dialysis care, which may improve patient, family, and health-system outcomes.

CONTEXTE: L'espérance de vie de bon nombre de patients traités par hémodialyse chronique se compare à celle des patients atteints d'un cancer métastatique. Cependant, les tendances d'utilisation des soins palliatifs à domicile chez les patients hémodialysés sont encore peu connues. OBJECTIF DE L'ÉTUDE: Nous souhaitions faire une analyse de l'état actuel des choses afin d'éclairer sur la mesure et l'amélioration de la qualité des soins palliatifs en Ontario. MÉTHODOLOGIE: Nous avons mené une étude descriptive des issues pour les patients et de l'utilisation des soins palliatifs à domicile chez les patients hémodialysés en Ontario. Plusieurs ensembles de données provinciales en soins de santé ont été employés pour procéder à l'analyse. La dernière année de vie des patients décédés entre janvier 2010 et décembre 2014 a constitué la période étudiée. RÉSULTATS: Les patients satisfaisant les critères d'inclusion étaient au nombre de 9 611. La cohorte était constituée à 41 % de femmes. Au moment du décès, l'âge médian (Q1; Q3) des patients était de 75 ans (66; 82 ans) et la médiane de la durée des traitements d'hémodialyse était de trois ans en moyenne (1,0; 6,0 ans). Parmi les comorbidités recensées au décès, 65 % des patients étaient aussi diabétiques, environ un tiers (29,3 %) étaient atteints de démence et 13,9 % présentaient des néoplasmes. Dans les 30 jours précédant leur décès, 19,9 % des patients avaient cessé leurs traitements de dialyse. Au cours de la dernière année de vie, seulement 13,1 % des patients de la cohorte avaient reçu au moins un service de soins palliatifs à domicile. Lorsque comparés aux patients n'ayant reçu aucun service en soins palliatifs, ils se sont moins souvent présentés aux urgences et ont moins souvent séjourné dans les unités de soins intensifs. De plus, une plus grande proportion des patients ayant reçu des soins palliatifs sont décédés à domicile, soit 17,1 % contre 1,4 % des patients n'ayant reçu aucun service en soins palliatifs. Enfin, le taux de mortalité associé à un séjour aux soins intensifs s'est avéré bien inférieur chez les patients qui avaient reçu des soins palliatifs, soit 8,1 % contre 37,8 % pour les patients n'ayant reçu aucun service de soins palliatifs. CONCLUSION: En Ontario, une très faible proportion des patients hémodialysés a reçu du soutien par l'entremise du système de soins palliatifs à domicile au cours de la période étudiée. Il semble donc y avoir une possibilité d'améliorer l'offre de soins palliatifs parallèlement aux traitements de dialyse; et ceci pourrait avoir une incidence positive sur les patients et leurs proches, de même que sur le système de santé.

Risk of rhabdomyolysis from 5-α reductase inhibitors.

PURPOSE: A recent regulatory warning and case reports have described the development of muscle complications with the use of 5-α reductase inhibitors (5ARIs). We wished to determine if there was a link between rhabdomyolysis and 5ARI usage. METHODS: We used a matched cohort design and linked administrative data from the province of Ontario, Canada, to investigate the risk of rhabdomyolysis in men using either finasteride or dutasteride. A total of 99 covariates were measured. We identified 93 197 men ≥66 years of age who initiated a new prescription for a 5ARI, and they were matched using a propensity score to an equal number of men not prescribed a 5ARI. RESULTS: New initiation of 5ARIs was not associated with a significantly increased risk of rhabdomyolysis (hazard ratio [HR] 1.21, 95% confidence interval [CI], 1.00-1.48, P = .06). When we examined the risk of rhabdomyolysis in the year prior to the initiation of a 5ARI, we found that men who would go on to use a 5ARI in the future had an elevated risk of rhabdomyolysis even prior to starting the medication (HR 1.31, 95% CI, 1.05-1.64, P = .01). Our secondary outcome of myositis and myopathy was significantly higher among 5ARI users (HR 1.63, 95% CI, 1.48-1.80, P < .01), and this risk was not present prior to 5ARI usage. CONCLUSION: 5-α reductase inhibitors do not appear to be associated with the development of rhabdomyolysis; however, they may be associated with an increased risk of myopathy and myositis.