Adding epitope compatibility to deceased donor kidney allocation criteria: recommendations from a pan-Canadian online public deliberation.

BACKGROUND: The widening supply-demand imbalance for kidneys necessitates finding ways to reduce rejection and improve transplant outcomes. Human leukocyte antigen (HLA) epitope compatibility between donor and recipient may minimize premature graft loss and prolong survival, but incorporating this strategy to deceased donor allocation criteria prioritizes transplant outcomes over wait times. An online public deliberation was held to identify acceptable trade-offs when implementing epitope compatibility to guide Canadian policymakers and health professionals in deciding how best to allocate kidneys fairly. METHODS: Invitations were mailed to 35,000 randomly-selected Canadian households, with over-sampling of rural/remote locations. Participants were selected for socio-demographic diversity and geographic representation. Five two-hour online sessions were held from November-December 2021. Participants received an information booklet and heard from expert speakers prior to deliberating on how to fairly implement epitope compatibility for transplant candidates and governance issues. Participants collectively generated and voted on recommendations. In the final session, kidney donation and allocation policymakers engaged with participants. Sessions were recorded and transcribed. RESULTS: Thirty-two individuals participated and generated nine recommendations. There was consensus on adding epitope compatibility to the existing deceased donor kidney allocation criteria. However, participants recommended including safeguards/flexibility around this (e.g., mitigating declining health). They called for a transition period to epitope compatibility, including an ongoing comprehensive public education program. Participants unanimously recommended regular monitoring and public sharing of epitope-based transplant outcomes. CONCLUSIONS: Participants supported adding epitope compatibility to kidney allocation criteria, but advised safeguards and flexibility around implementation. These recommendations provide guidance to policymakers about incorporating epitope-based deceased donor allocation criteria.

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.

The COVID-19 pandemic and organ donation and transplantation: ethical issues.

BACKGROUND: The COVID-19 pandemic has had a significant impact on the health system worldwide. The organ and tissue donation and transplantation (OTDT) system is no exception and has had to face ethical challenges related to the pandemic, such as risks of infection and resource allocation. In this setting, many Canadian transplant programs halted their activities during the first wave of the pandemic. METHOD: To inform future ethical guidelines related to the COVID-19 pandemic or other public health emergencies of international concern, we conducted a literature review to summarize the ethical issues. RESULTS: This literature review identified three categories of ethical challenges. The first one describes the general ethical issues and challenges reported by OTDT organizations and transplantation programs, such as risks of COVID-19 transmission and infection to transplant recipients and healthcare professionals during the transplant process, risk of patient waitlist mortality or further resource strain where transplant procedures have been delayed or halted, and resource allocation. The second category describes ethical challenges related to informed consent in the context of uncertainty and virtual consent. Finally, the third category describes ethical issues related to organ allocation, such as social considerations in selecting transplant candidates. CONCLUSION: This literature review highlights the salient ethical issues related to OTDT during the current COVID-19 pandemic. As medical and scientific knowledge about COVID-19 increases, the uncertainties related to this disease will decrease and the associated ethical issues will continue to evolve.

Survey of Canadian critical care physicians' knowledge and attitudes towards legislative aspects of the deceased organ donation system.

PURPOSE: We surveyed Canadian critical care physicians who may care for patients who are potential organ donors to understand their attitudes and knowledge of legislation governing the deceased organ donation system. METHODS: We used a web-based, self-administered survey that included questions related to opt-out consent and mandatory referral legislation. Potential participants were identified through membership lists of professional societies and manual searches. We designed our survey using standardized methods and administered it in February and March 2018. RESULTS: Fifty percent (263/529) of potential participants completed the questionnaire. A majority (61%; 144/235) supported a change towards an opt-out consent model, and 77% (181/235) stated they believe it would increase donation rates. Asked if opt-out consent would change their practices, 71% (166/235) stated an opt-out model would not change how or if they approach families to discuss donation. Fifty-six percent (139/249) supported mandatory referral laws, while only 42% (93/219) of those working in provinces with mandatory referral correctly stated that such laws exist in their province. Respondents gave variable responses on who should be accountable when patients are not referred, and 16% (40/249) believed no one should be held accountable. CONCLUSIONS: While a majority of critical care physicians supported opt-out consent and mandatory referral, many were neutral or against it. Many were unaware of existing laws and had variable opinions on how to ensure accountability. Efforts to increase understanding of how legislative models influence practice are required for any law to achieve its desired effect.

RéSUMé: OBJECTIF: Nous avons étudié les intensivistes canadiens qui prennent soin de patients potentiellement donneurs d'organes afin de comprendre leurs attitudes et connaissances quant aux lois régissant le système de don d'organes de donneurs décédés. MéTHODE: Nous avons utilisé un sondage électronique auto-administré incluant des questions liées au consentement implicite avec option de retrait et à la législation de référence obligatoire. Les participants potentiels ont été identifiés grâce aux listes des sociétés professionnelles et par des recherches manuelles. Nous avons conçu notre sondage à l'aide de méthodes standardisées et l'avons administré en février et mars 2018. RéSULTATS: Cinquante pour cent (263/529) des participants potentiels ont complété le questionnaire. La majorité (61 %; 144/235) était en faveur d'un changement vers un modèle de consentement avec option de retrait, et 77 % (181/235) ont déclaré penser que cela augmenterait les taux de don. Lorsqu'il leur a été demandé si l'option de consentement avec option de retrait modifierait leur pratique, 71 % (166/235) ont affirmé qu'un modèle avec possibilité de retrait ne modifierait pas leur façon ou leur intention d'approcher les familles pour parler de don d'organes. Cinquante-six pour cent (139/249) étaient en faveur de lois concernant la référence obligatoire, alors que seulement 42 % (93/219) des intensivistes travaillant dans des provinces où la référence était obligatoire ont correctement déclaré que de telles lois existaient dans leur province. Les répondants ont donné des réponses variables quant à l'imputabilité lors de la non-référence des patient, et 16 % (40/249) étaient d'avis que personne ne devrait être tenu responsable. CONCLUSION: Alors que la majorité des intensivistes était en faveur du consentement avec option de retrait et de la référence obligatoire, bon nombre n'avaient pas d'avis sur la question ou étaient contre. De nombreux intensivistes ne connaissaient pas bien les lois existantes et avaient des opinions variables sur la façon de garantir l'imputabilité. Des efforts sont nécessaires pour augmenter la compréhension de la manière dont les modèles législatifs influencent la pratique afin qu'une loi, quelle qu'elle soit, ait l'effet désiré.

Survey of Canadian intensivists on physician non-referral and family override of deceased organ donation.

PURPOSE: Intensive care physicians play an important role in the identification and referral of potential organ donors in Canada. Nevertheless, little is known about intensivists' attitudes or behaviours in situations where families override previously expressed consent to donate; nor why physicians elect not to refer patients who are potential donors to provincial organ donation organizations (physician non-referral). METHODS: We integrated questions regarding family override and physician non-referral into an online, self-administered survey of Canadian intensivists. We report results descriptively. RESULTS: Fifty percent of targeted respondents (n = 550) participated. Fifty-five percent reported having witnessed family override situations and 44% reported having personally not referred patients who were potential donors. Fifty-six percent of respondents stated they would not pursue donation in the face of family override; 2% stated they would continue with the donation process. Fear of loss of trust in the donation system (81%) and obligation to respect the grief and desires of surrogate decision makers (71%) were frequently reported reasons to respect family override requests. Respondents who chose not to refer patients often did so based on organ dysfunction they assumed would preclude donation (59%), or a perception that the family was too distressed to consider donation (42%). No respondents reported that personally held beliefs against organ donation influenced their decision. CONCLUSION: Physicians caring for patients who are potential organ donors commonly encounter both family override and physician non-referral situations. Knowledge translation of optimal practices in identification and referral could help ensure that physician practices align with legal requirements and practice recommendations.

Potential organ donor identification and system accountability: expert guidance from a Canadian consensus conference.

PURPOSE: Deceased donation rates in Canada remain below the predicted potential and lag behind leading countries. Missing a potential donor leads to preventable death and disability of transplant candidates and increased healthcare costs. METHODS: Stakeholders were invited to a national consensus conference on improving deceased organ donor identification and referral (ID&R) and healthcare system accountability. In advance, participants received evidence-based, background documents addressing death audits, clinical triggers, required referral legislation, ethics, clinical pathways, and donation standards. At the conference, expert presentations and summaries of background information prepared by the Steering Committee informed group discussions of the preset questions. The conference's themes were: 1) expectations of potential donors, recipients and their families; 2) donor ID&R: clinical and legal perspectives; 3) enhancing accountability: gaps and solutions; and 4) enhancing accountability: quality/safety organizations. RESULTS: Thirty-seven consensus statements were generated. At the healthcare professional (HCP) level, key statements include: 1) donation be consistently addressed as part of end-of-life care but only after a decision to withdraw life-sustaining treatment; 2) HCP know how and when to identify and refer potential donors; and 3) transplant candidates be informed of local allocation guidelines and performance. At the healthcare system level, key statements include: 1) national adoption of clinical criteria to trigger ID&R; 2) dedicated resources to match donation activities, including transfer of a potential donor; 3) performance measurement through death audits; 4) reporting and investigation of missed donation opportunities (MDO); 5) recognition of top performers; and 6) missed donor ID&R be considered a preventable and critical safety incident. CONCLUSION: Our consensus statements establish HCP and healthcare system responsibilities regarding potential organ donor ID&R and include the tracking, reviewing and elimination of MDO through system-wide death audits. Once implemented, these consensus statements will help honour patients' wishes to donate, improve service to potential transplant recipients, and support HCPs in fulfilling their ethical and legal responsibilitites. Next steps include implementation, assessment of their impact on donation rates, and investigation of new evidence-based targets for system improvement.

RéSUMé: OBJECTIF: Au Canada, les dons des personnes décédées restent inférieurs aux possibilités prédites et loin derrière les pays les plus performants. Le manque de donneurs potentiels aboutit à des décès évitables, à l'invalidité des candidats à la transplantation et à des coûts de soins de santé plus élevés. MéTHODES: Les principaux acteurs ont été invités à une conférence de consensus nationale sur l'amélioration de l'identification et de l'orientation des donneurs d'organes décédés (ID&R ­Identification and referral) et sur la responsabilité du système de santé. Les participants ont reçu à l'avance des documents basés sur des données probantes qui abordaient l'audit des décès, les facteurs cliniques identifiants, la législation requise pour l'orientation, l'éthique, les cheminements cliniques et les normes de dons. Au cours de la conférence, les présentations d'experts et des résumés de l'information de fond préparés par le Comité de pilotage ont alimenté les discussions de groupe sur les questions préparées. Les thèmes de la conférence étaient les suivants : 1) attentes des donneurs potentiels, des receveurs et de leurs familles; 2) identification et orientation des donneurs : points de vue cliniques et légaux; 3) amélioration de la responsabilité : lacunes et solutions; et 4) amélioration de la responsabilité : organisations de la qualité/sécurité. RéSULTATS: Trente-sept énoncés de consensus ont été générés. Au niveau des professionnels de santé, les principaux énoncés sont les suivants : 1) que le don soit constamment abordé dans le cadre des soins de fin de vie, mais seulement après avoir pris la décision d'arrêter les traitements de maintien de vie; 2) les professionnels de santé ont le savoir-faire pour identifier et orienter les donneurs potentiels; et 3) les candidats à la transplantation doivent être informés des lignes directrices locales sur les attributions et sa performance. Au niveau du système de soins de santé, les principaux énoncés sont les suivants : 1) l'adoption au niveau national de critères cliniques déclenchant l'identification et l'orientation des donneurs; 2) des ressources dédiées aux activités d'appariement des dons, y compris au transfert des donneurs potentiels; 3) des mesures de performance par des audits des décès; 4) la déclaration et des investigations sur les opportunités de dons manqués; 5) la reconnaissance des plus performants; et 6) l'identification et l'orientation manquées de donneurs doivent être considérées comme un incident évitable et critique. CONCLUSION: Nos énoncés de consensus établissent les responsabilités des professionnels de santé et du système de soins pour ce qui concerne l'identification et l'orientation des donneurs potentiels d'organes; ils incluent le suivi, l'analyse et l'élimination des dons manqués via une vérification des causes de décès dans tout le système. Une fois mis en œuvre, ces énoncés de consensus contribueront à honorer les souhaits des patients en matière de dons, améliorer les services apportés aux receveurs potentiels de greffes et soutenir les professionnels de santé dans l'accomplissement de leurs obligations éthiques et légales. Les étapes suivantes incluront la mise en œuvre, l'évaluation de leur impact sur les taux de dons et la recherche de nouvelles cibles basées sur des données probantes pour améliorer le système.

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Solid organ transplantation (SOT) is considered the optimal treatment for children with end-stage organ failure; however, increased efforts are needed to understand the gap surrounding equitable access to and health outcomes of SOT for Indigenous children. This scoping review summarizes the literature on the characteristics of access to and health outcomes of pediatric SOT among Indigenous children in the settler-colonial states of Canada, Aotearoa New Zealand, Australia, and the United States. A search was performed on MEDLINE, EMBASE, PsycINFO, and CINAHL for studies matching preestablished eligibility criteria from inception to November 2021. A preliminary gray literature search was also conducted. Twenty-four studies published between 1996 and 2021 were included. Studies addressed Indigenous pediatric populations within the United States (n = 7), Canada (n = 6), Aotearoa New Zealand (n = 5), Australia (n = 5), and Aotearoa New Zealand and Australia combined (n = 1). Findings showed that Indigenous children experienced longer time on dialysis, lower rates of preemptive and living donor kidney transplantation, and disparities in patient and graft outcomes after kidney transplantation. There were mixed findings about access to liver transplantation for Indigenous children and comparable findings for graft and patient outcomes after liver transplantation. Social determinants of health, such as geographic remoteness, lack of living donors, and traditional spiritual beliefs, may affect SOT access and outcomes for Indigenous children. Evidence gaps emphasize the need for action-based initiatives within SOT that prioritize research with and for Indigenous pediatric populations. Future research should include community-engaged methodologies, situated within local community contexts, to inform culturally safe care for Indigenous children.

Organ Donation Organization Architecture: Recommendations From an International Consensus Forum.

This report contains recommendations from 1 of 7 domains of the International Donation and Transplantation Legislative and Policy Forum (the Forum). The purpose is to provide expert guidance on the structure and function of Organ and Tissue Donation and Transplantation (OTDT) systems. The intended audience is OTDT stakeholders working to establish or improve existing systems. Methods: The Forum was initiated by Transplant Québec and co-hosted by the Canadian Donation and Transplantation Program partnered with multiple national and international donation and transplantation organizations. This domain group included administrative, clinical, and academic experts in OTDT systems and 3 patient, family, and donor partners. We identified topic areas and recommendations through consensus, using the nominal group technique. Selected topics were informed by narrative literature reviews and vetted by the Forum's scientific committee. We presented these recommendations publicly, with delegate feedback being incorporated into the final report. Results: This report has 33 recommendations grouped into 10 topic areas. Topic areas include the need for public and professional education, processes to assure timely referral of patients who are potential donors, and processes to ensure that standards are properly enforced. Conclusions: The recommendations encompass the multiple roles organ donation organizations play in the donation and transplantation process. We recognize the diversity of local conditions but believe that they could be adapted and applied by organ donation organizations across the world to accomplish their fundamental objectives of assuring that everyone who desires to become an organ donor is given that opportunity in a safe, equitable, and transparent manner.

International Donation and Transplantation Legislative and Policy Forum: Methods and Purpose.

Organ and tissue donation and transplantation (OTDT) legislation and policies vary around the world, and this variability contributes to discrepancies in system performance. This article describes the purpose and methodology of an international forum that was organized to create consensus recommendations related to key legal and policy attributes of an ideal OTDT system. The intent is to create guidance for legislators, regulators, and other system stakeholders who aim to create or reform OTDT legislation and policy. Methods: This Forum was initiated by Transplant Québec and cohosted by the Canadian Donation and Transplantation Program partnered with multiple national and international donation and transplantation organizations. Seven domains were identified by the scientific committee' and domain working groups identified specific topics for recommendations: Baseline Ethical Principles, Legal Foundations, Consent Model and Emerging Legal Issues, Donation System Architecture, Living Donation, Tissue Donation, and Research and Innovation Systems and Emerging Issues. Patient, family, and donor partners were integrated into every stage of the planning and execution of the Forum. Sixty-one participants from 13 countries contributed to recommendation generation. Topic identification and recommendation consensus was completed over a series of virtual meetings from March to September 2021. Consensus was achieved by applying the nominal group technique informed by literature reviews performed by participants. Recommendations were presented at a hybrid in-person and virtual forum in Montreal, Canada, in October 2021. Output: Ninety-four recommendations (9-33 per domain) and an ethical framework for evaluating new policies were developed during the Forum proceedings. The accompanying articles include the recommendations from each domain and justifications that link the consensus to existing literature and ethical or legal concepts. Conclusions: Although the recommendations could not account for the vast global diversity of populations, healthcare infrastructure, and resources available to OTDT systems, they were written to be as widely applicable as possible.

Characteristics and Motivation of Solid Organ Transplant Recipients Attending the Canadian Transplant Games.

BACKGROUND: The Canadian Transplant games ("Games") were created to increase awareness of organ donation and highlight the importance of staying active and healthy post-transplant. It is unclear what motivates solid organ transplant (SOT) recipients to participate and whether the games serve as an incentive for SOT recipients to increase their physical activity (PA) levels. OBJECTIVES: 1. To describe the characteristics of participants from past games and their motivation for attending and 2. to determine whether there was an interest in participating in goal-based, pre-games exercise training programs. METHODS: A web-based questionnaire was sent to adult SOT recipients who were members of the Canadian Transplant Association. The survey included questions about why participants attended, their PA levels, and their interest in a pre-games training program. RESULTS: Of the 157 participants, more were male than female; the 35-54-year-old age group was the most common; and 62% of respondents received a liver or kidney transplant. The most common reasons for participating in the games were to showcase health post-transplant, promote awareness of organ donation, sports competition, and social reasons. Sixty-five percent of respondents reported that they would be interested in an exercise program to be more physically prepared for the competition. CONCLUSION: Pre-games training programs could be developed to motivate participation and help participants achieve higher training intensities and foster social interaction. Directing resources to individuals who do not attend the games and to those who are not physically active should be considered.

Summary of International Recommendations for Donation and Transplantation Programs During the Coronavirus Disease Pandemic.

BACKGROUND: The COVID-19 pandemic has disrupted all aspects of the international organ donation and transplantation (ODT) system. Multiple organizations have developed guidance, but to date, no comparative summary has emerged to understand differences in existing recommendations. METHODS: We developed and applied a comparative methodology to a convenience sample of recommendations available on The Transplantation Society website. Document types were classified according to characteristics such as type of organization (eg, governing body or professional society) and geographic region. Recommendations were grouped according to content, and summaries were posted on a public website. This process is ongoing and will be updated as new recommendations become available. RESULTS: Eighteen documents were extracted in the initial review. All documents were based on expert opinion, and none described a formal literature review or adherence with clinical guideline development processes. Recommendation categories included screening of potential donors, risk assessment of potential recipients, posttransplant risk, living/paired donation, protection of ODT professionals, and ethics/logistics. While many documents included similar recommendations, such as the need to screen and test patients who are potential donors, there was variation on some topics. Type of recommended laboratory testing varied with 64% recommending nasopharyngeal swabs, 43% oropharyngeal, and 24% bronchial aspirates. Updated results are available at https://cdtrp.ca/en/covid-19-international-recommendations-for-odt/. CONCLUSIONS: The current state of COVID-19 ODT recommendations is limited to expert opinion. Substantial variation exists regarding recommendations, which are based on emerging but currently low-quality evidence. This summary of existing recommendations will serve to inform priorities for evidence-based recommendations.

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.

COVID-19 pandemic and worldwide organ transplantation: a population-based study.

BACKGROUND: Preliminary data suggest that COVID-19 has reduced access to solid organ transplantation. However, the global consequences of the COVID-19 pandemic on transplantation rates and the effect on waitlisted patients have not been reported. We aimed to assess the effect of the COVID-19 pandemic on transplantation and investigate if the pandemic was associated with heterogeneous adaptation in terms of organ transplantation, with ensuing consequences for waitlisted patients. METHODS: In this population-based, observational, before-and-after study, we collected and validated nationwide cohorts of consecutive kidney, liver, lung, and heart transplants from 22 countries. Data were collected from Jan 1 to Dec 31, 2020, along with data from the same period in 2019. The analysis was done from the onset of the 100th cumulative COVID-19 case through to Dec 31, 2020. We assessed the effect of the pandemic on the worldwide organ transplantation rate and the disparity in transplant numbers within each country. We estimated the number of waitlisted patient life-years lost due to the negative effects of the pandemic. The study is registered with ClinicalTrials.gov, NCT04416256. FINDINGS: Transplant activity in all countries studied showed an overall decrease during the pandemic. Kidney transplantation was the most affected, followed by lung, liver, and heart. We identified three organ transplant rate patterns, as follows: countries with a sharp decrease in transplantation rate with a low COVID-19-related death rate; countries with a moderate decrease in transplantation rate with a moderate COVID-19-related death rate; and countries with a slight decrease in transplantation rate despite a high COVID-19-related death rate. Temporal trends revealed a marked worldwide reduction in transplant activity during the first 3 months of the pandemic, with losses stabilising after June, 2020, but decreasing again from October to December, 2020. The overall reduction in transplants during the observation time period translated to 48 239 waitlisted patient life-years lost. INTERPRETATION: We quantified the impact of the COVID-19 pandemic on worldwide organ transplantation activity and revealed heterogeneous adaptation in terms of organ transplantation, both at national levels and within countries, with detrimental consequences for waitlisted patients. Understanding how different countries and health-care systems responded to COVID-19-related challenges could facilitate improved pandemic preparedness, notably, how to safely maintain transplant programmes, both with immediate and non-immediate life-saving potential, to prevent loss of patient life-years. FUNDING: French national research agency (INSERM) ATIP Avenir and Fondation Bettencourt Schueller.

Disseminating Knowledge to Providers on Exercise Training After Solid Organ Transplantation.

INTRODUCTION: The objectives of our dissemination project were (1) to disseminate the evidence supporting exercise training in solid organ transplantation to exercise professionals, health-care professionals, physicians, and directors of transplant programs in order to enhance their ability to apply evidence to practice and (2) to build a community of exercise professionals and researchers across Canada. METHODS: We used the 5-step Patient-Centered Outcomes Research Institute model for knowledge translation to guide our project: (1) evidence assessment, (2) audience and partner identification, (3) dissemination, (4) implementation, and (5) evaluation. After meeting with experts in the field, conducting a literature review, and identifying an appropriate audience, we took our presentations on the road across Canada. RESULTS: We visited 10 transplant centers and held interactive knowledge translation sessions in each center. To provide sustainability and to facilitate the adoption of the research evidence, we founded the Canadian Network for Rehabilitation and Exercise for Solid Organ Transplant Optimal Recovery network and created its website. CONCLUSIONS: Our project raised awareness of the importance of exercise among many health professionals in Canada and built a community of exercise professionals and researchers in the field of transplantation through the rehabilitation network. It also led to the creation of online resources that will facilitate the implementation of rehabilitation programs in transplant centers.

Practice Patterns in the Treatment and Monitoring of Acute T Cell-Mediated Kidney Graft Rejection in Canada.

BACKGROUND: One of the goals of the Canadian National Transplant Research Program (CNTRP) is to develop novel therapies for acute rejection that could positively affect graft outcomes with greater efficacy or less toxicity. To develop innovative management strategies for kidney graft rejection, new modalities need to be compared with current clinical practices. However, there are no standardized practices concerning the management of acute T cell-mediated rejection (TCMR). OBJECTIVES: To describe clinicians' practice patterns in the diagnosis, treatment, and monitoring of acute TCMR in Canada. DESIGN: Survey. SETTING PATIENTS/PARTICIPANTS: Canadian transplant nephrologists and transplant surgeons involved in the management of acute TCMR. METHODS AND MEASUREMENTS: We developed an anonymous, web-based survey consisting of questions related to the diagnosis, treatment, and monitoring of TCMR. The survey was disseminated on 3 occasions between June and October 2016 through the Canadian Society of Transplantation (CST) kidney group electronic mailing list. RESULTS: Forty-seven respondents, mostly transplant nephrologists (97%), originating from at least 18 of the 25 Canadian centers offering adult or pediatric kidney transplantation, participated in the study. Surveillance biopsies were used by 28% of respondents to screen for kidney graft rejection. High-dose steroids were used by most of the respondents to treat clinical and subclinical Banff grade 1A and 1B rejections. Nine percent (95% confidence interval [CI]: 1-17) of practitioners used lymphocyte-depleting agents as the first-line approach for the treatment of Banff grade 1B acute rejection. Eighteen percent (95% CI: 7-29) and 36% (95% CI: 8-65) of respondents reported that they would not use high-dose steroids for treating clinical and subclinical borderline rejections, respectively. Seventy percent (95% CI: 54-83) of respondents answered that there was no indication to assess histological response to treatment independent of the change in kidney function. LIMITATIONS: The limitations of this study are its limited sample size and the low representation of pediatric specialists. CONCLUSIONS: There is heterogeneity regarding the use of surveillance biopsies, treatment of borderline rejection, and modalities to monitor treatment response among transplant physicians. Our results illustrate the current state of practice patterns across Canada and can be used to inform the design of future trials.

CONTEXTE: Un des objectifs du Programme national de recherche en transplantation rénale du Canada (PNRTC) est de développer des traitements plus efficaces et moins toxiques en vue d'améliorer l'issue des greffes. Il est impératif de comparer ces nouvelles modalités aux pratiques cliniques existantes si l'on veut élaborer des stratégies de prise en charge thérapeutiques innovantes. Cependant, en contexte de greffe rénale, il n'existe aucune pratique standardisée pour la prise en charge thérapeutique du rejet aigu à médiation cellulaire (RAMC) provoqué par la cytotoxicité des lymphocytes T. OBJECTIF: Décrire le schéma de pratique des médecins canadiens en matière de diagnostic, de traitement et de monitorage du RAMC. TYPE D'ÉTUDE: Il s'agit d'une étude menée sous forme de sondage. PARTICIPANTS: Les chirurgiens et néphrologues en transplantologie impliqués dans la prise en charge du RAMC au Canada. MÉTHODOLOGIE: Nous avons préparé un sondage Web anonyme constitué de questions relatives au diagnostic et au monitorage du RAMC. Les répondants visés étaient les abonnés à la liste d'envoi du groupe de transplantation rénale de la Société canadienne de transplantation (SCT). Ils ont reçu le sondage à trois reprises entre juin et octobre 2016. RÉSULTATS: Les répondants, au nombre de 47, étaient en grande majorité des néphrologues transplantologues (97 %). Ils provenaient d'au moins 18 des 25 centres hospitaliers canadiens dans lesquels on pratique des greffes rénales (adultes ou pédiatriques). Vingt-huit pour cent (28 %) des répondants ont recours aux biopsies de surveillance pour évaluer le risque de rejet du greffon. Les stéroïdes administrés à fortes doses sont employés par la plupart des répondants pour traiter les rejets cliniques et infracliniques de stade 1A et 1B (classification de Banff). Les agents de déplétion des lymphocytes sont utilisés par 9 % (IC 95 % : 1-17) des praticiens comme approche thérapeutique de première ligne pour les rejets aigus de stade 1B de Banff. En matière de traitement des cas rejets limites cliniques et infracliniques, 18% (IC 95 % : 7-29) et 36 % (IC 95 % : 8-65) des répondants ont indiqués qu'ils n'emploieraient pas de stéroïdes à forte dose. Enfin, 70 % (IC 95 % : 54-83) des spécialistes sondés jugeaient qu'il n'y avait pas d'indication d'évaluer la réponse histologique au traitement indépendamment de la réponse au traitement en terme de fonction rénale. LIMITES DE L'ÉTUDE: Les résultats du sondage sont limités par le faible nombre de répondants et par la sous-représentation des spécialistes en pédiatrie. CONCLUSION: Chez les médecins sondés, on a constaté des différences dans trois aspects de la prise en charge de la greffe rénale : la fréquence du recours aux biopsies de surveillance, le traitement des cas limites de rejet et les modalités employées pour mesurer la réponse au traitement. Nos résultats témoignent de l'hétérogénéité actuelle des schémas de pratique au Canada et pourraient servir à orienter la conception d'études ultérieures.

What does patient engagement mean for Canadian National Transplant Research Program Researchers?

PLAIN ENGLISH SUMMARY: In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research.We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement.This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP. ABSTRACT: Background Involving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers' perspectives on patient engagement (PE) in organ donation and transplant research in Canada. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses. Results The researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support. Conclusion This study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.

Perspectives of Patients, Caregivers and Researchers on Research Priorities in Donation and Transplantation in Canada: A Pilot Workshop.

BACKGROUND: It is vitally important to seek input from key stakeholders to increase the quality and relevance of health-related research and accelerate its adoption into practice. Patients and caregivers have rarely been involved in setting research priorities in the transplantation and donation field. The objectives of this explorative study are: (i) to discuss research priorities within the Canadian National Transplant Research Program during a priority-setting exercise with patients, caregivers, organ donors and researchers and (ii) to compare the identified priorities with research published in 2 prestigious transplantation journals. METHODS: A pilot workshop attended by 10 patients and caregivers and 5 researchers was held in Montréal (Quebec, Canada) in August 2014 to identify research priorities. Priorities were identified using a thematic analysis of the workshop transcription conducted by multiple coders. These priorities were compared with the topics of research articles published in 2 major transplantation journals between 2012 and 2014. RESULTS: The themes of the 10 research priorities identified by study participants were related to different research domains: social, cultural, and environmental health factors (4); biomedical or clinical (4); and research about health systems and services (2). 26.7% of the research articles published were related to the identified priorities. Thirteen percent looked at ways to improve graft survival and 8.5% looked at the development of tolerance, 2 priorities identified by participants. Fewer than 5% examined the other 8 research priorities identified as important by workshop participants. CONCLUSIONS: This is the first study reporting patients' and researchers' priorities in the field of transplantation and donation in Canada. There is a discrepancy between topics that key stakeholders find important and research published in 2 major transplantation journals. The research priorities identified during our initial workshop will be validated through a national survey and workshop.

Transdisciplinary tour-de-force: The Canadian National Transplant Research Program.

The Canadian National Transplant Research Program, launched in 2013 with funding from the Canadian Institutes for Health Research and partners, bridges research in the fields of solid organ transplant, hematopoietic cell transplant, and organ donation. We describe the philosophy, structure, accomplishments, and challenges faced by the Canadian National Transplant Research Program to expand on facilitators and overcome roadblocks to successfully developing a transdisciplinary national research structure.