Kidney transplant candidates' perspectives on the implementation of a Canadian Willingness to Cross program: A strategy to increase access to kidney transplantation for highly sensitized patients.

BACKGROUND: Kidney transplantation is the optimal treatment for end-stage renal disease. However, highly sensitized patients (HSPs) have reduced access to transplantation, leading to increased morbidity and mortality on the waiting list. The Canadian Willingness to Cross (WTC) program proposes allowing transplantation across preformed donor specific antibodies (DSA) determined to be at a low risk of rejection under the adaptive design framework. This study collected patients' perspectives on the development of this program. METHODS: Forty-one individual interviews were conducted with kidney transplant candidates from three Canadian transplant centers in 2022. The interviews were digitally recorded and transcribed for subsequent analyses. RESULTS: Despite limited familiarity with the adaptive design, participants demonstrated trust in the researchers. They perceived the WTC program as a pathway for HSPs to access transplantation while mitigating transplant-related risks. HSPs saw the WTC program as a source of hope and an opportunity to leave dialysis, despite acknowledging inherent uncertainties. Some non-HSPs expressed concerns about fairness, anticipating increased waiting times and potential compromise in kidney graft longevity due to higher rejection risks. Participants recommended essential strategies for implementing the WTC program, including organizing informational meetings and highlighting the necessity for psychosocial support. CONCLUSION: The WTC program emerges as a promising strategy to enhance HSPs' access to kidney transplantation. While HSPs perceived this program as a source of hope, non-HSPs voiced concerns about distributive justice issues. These results will help develop a WTC program that is ethically sound for transplant candidates.

Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

KEeP ACTIVe Club Study: Kidney Transplant Recipients' Experiences of a Physical Activity and Social Interaction Virtual Group.

Background: It can be difficult for kidney transplant recipients (KTRs) to be physically active after their transplantation. Physical inactivity is a risk factor for cardiovascular disease, one of the leading cause of death among KTRs. To help KTRs start and maintain a physical activity routine, we developed the KEeP ACTIVe Club, a 6-month online intervention with access to a kinesiologist, a patient partner, and a private support group with an online platform (Facebook). Objective: The objective of this study was to capture the participants' experiences of the KEeP ACTIVe Club. Design: Individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) and the McGill University Health Center (MUHC) kidney transplant programs. Participants: Kidney transplant recipients who participated in the KEeP ACTIVe Club. Methods: Between October and December 2021, we conducted 11 individual semi-directed interviews with KTRs from 2 urban kidney transplant programs who participated in the KEeP ACTIVe Club. The interviews were digitally recorded and transcribed. Thematic analysis was conducted. Results: Participants' principal motivation to participate in the KEeP ACTIVe Club was to improve their physical fitness following their transplant in a pandemic period. One of the main benefits of the KEeP ACTIVe Club was the improvement of participant's self-confidence and the knowledge gained regarding exercises adapted to their reality as KTRs. However, the small number of participants and the schedules of classes offered were viewed as a pitfall of the current intervention. Finally, the peer mentoring and support gained by other participants were important and viewed as highly impactful aspects of the KEeP ACTIVe Club. Limitations: Only 11 of the 18 patients who participated in the KEeP ACTIVe Club took part in the interviews. Conclusion: Participants reported a positive experience with the KEeP ACTIVe Club. Peer mentoring and support gained from other participants seem to be essential aspects of the experience within the KEeP ACTIVe Club. This program is a good avenue to offer in post-transplant care to help KTRs to be more active and to connect with other patients.

Contexte: Il peut être difficile pour les receveurs d'une greffe de rein d'être actifs physiquement après la transplantation. L'inactivité est un facteur de risque de maladie cardiovasculaire, une des principales causes de décès chez les greffés du rein. Afin d'aider ces patients à entreprendre une routine d'activité physique et à la maintenir, nous avons développé le KEeP ACTIVe Club, une intervention en ligne d'une durée de six mois qui donne accès à un kinésiologue, à un patient partenaire et à un groupe privé de soutien par le biais d'une plateforme en ligne (Facebook). Objectifs: Connaître l'expérience des participants au KEeP ACTIVe Club. Conception: Entretiens individuels. Cadre: Les programme de transplantation rénale du Center hospitalier de l'Université de Montréal (CHUM) et du Centre universitaire de santé McGill (CUSM). Participants: Des receveurs d'une greffe de rein ayant participé au KEeP ACTIVe Club. Méthodologie: Entre octobre et décembre 2021, nous avons mené 11 entretiens individuels semi-dirigés avec des receveurs d'une greffe rénale qui ont participé au KEeP ACTIVe Club dans deux programmes de transplantation en center urbain. Les entretiens ont été enregistrés en mode numérique, transcrits, puis une analyze thématique a été réalisée. Résultats: La principale motivation des receveurs à participer au KEeP ACTIVe Club était d'améliorer leur condition physique après la greffe, en période pandémique. Les principaux avantages d'avoir participé au KEeP ACTIVe Club ont été l'augmentation de la confiance en soi et l'acquisition de connaissances sur des exercices adaptés à leur réalité de greffés du rein. Le faible nombre de participants et l'horaire des cours proposés ont été perçus comme des faiblesses de l'intervention. Enfin, le mentorat par les pairs et le soutien reçu des autres participants ont été jugés importants et perçus comme des aspects très positifs du KEeP ACTIVe Club. Limites: Sur les dix-huit patients inscrits au KEeP ACTIVe Club, seuls onze ont participé aux entrevues. Conclusion: Les participants ont déclaré avoir eu une expérience positive avec le KEeP ACTIVe Club. Le mentorat par les pairs et le soutien reçu des autres participants semblent être des aspects essentiels de l'expérience positive vécue au sein du KEeP ACTIVe Club. Ce programme est une bonne avenue à proposer dans les soins post-transplantation pour aider les greffés du rein à être plus actifs physiquement et à échanger avec d'autres patients.

Canadian Kidney Transplant Professionals' Perspectives on Precision Medicine and Molecular Matching in Kidney Allocation.

Background: Antibody-mediated rejection is an important cause of kidney transplant loss. A new strategy requiring application of precision medicine tools in transplantation considers molecular compatibility between donors and recipients and holds the promise of improved immunologic risk, preventing rejection and premature graft loss. The objective of this study was to gather Canadian transplant professionals' perspectives on molecular compatibility in kidney transplantation. Methods: Seventeen Canadian transplant professionals (14 nephrologists, 2 nurses, and 1 surgeon) participated in semistructured interviews in 2021. The interviews were digitally recorded, transcribed, and analyzed using the qualitative description approach. Results: Participants identified fair access to transplantation as the most important principle in kidney allocation. Molecular compatibility was viewed as a promising innovation. However, participants were concerned about increased waiting times, negative impact on some patients, and potential problems related to the adequacy of information explaining this new technology. To mitigate the challenges associated with molecular matching, participants suggested integrating a maximum waiting time for molecular-matched kidneys and expanding the program nationally/internationally. Conclusions: Molecular matching in kidney transplantation is viewed as a promising technology for decreasing the incidence of antibody-mediated rejection and improving graft survival. Further studies are needed to determine how to ethically integrate this technology into the kidney allocation algorithm.

Automated screening of potential organ donors using a temporal machine learning model.

Organ donation is not meeting demand, and yet 30-60% of potential donors are potentially not identified. Current systems rely on manual identification and referral to an Organ Donation Organization (ODO). We hypothesized that developing an automated screening system based on machine learning could reduce the proportion of missed potentially eligible organ donors. Using routine clinical data and laboratory time-series, we retrospectively developed and tested a neural network model to automatically identify potential organ donors. We first trained a convolutive autoencoder that learned from the longitudinal changes of over 100 types of laboratory results. We then added a deep neural network classifier. This model was compared to a simpler logistic regression model. We observed an AUROC of 0.966 (CI 0.949-0.981) for the neural network and 0.940 (0.908-0.969) for the logistic regression model. At a prespecified cutoff, sensitivity and specificity were similar between both models at 84% and 93%. Accuracy of the neural network model was robust across donor subgroups and remained stable in a prospective simulation, while the logistic regression model performance declined when applied to rarer subgroups and in the prospective simulation. Our findings support using machine learning models to help with the identification of potential organ donors using routinely collected clinical and laboratory data.

Health System-Level Barriers to Living Donor Kidney Transplantation: Protocol for a Comparative Case Study Analysis.

BACKGROUND: Living donor kidney transplantation (LDKT) is the best treatment option for patients with kidney failure and offers significant medical and economic advantages for both patients and health systems. Despite this, rates of LDKT in Canada have stagnated and vary significantly across Canadian provinces, the reasons for which are not well understood. Our prior work has suggested that system-level factors may be contributing to these differences. Identifying these factors can help inform system-level interventions to increase LDKT. OBJECTIVE: Our objective is to generate a systemic interpretation of LDKT delivery across provincial health systems with variable performance. We aim to identify the attributes and processes that facilitate the delivery of LDKT to patients, and those that create barriers and compare these across systems with variable performance. These objectives are contextualized within our broader goal of increasing rates of LDKT in Canada, particularly in lower-performing provinces. METHODS: This research takes the form of a qualitative comparative case study analysis of 3 provincial health systems in Canada that have high, moderate, and low rates of LDKT performance (the percentage of LDKT to all kidney transplantations performed). Our approach is underpinned by an understanding of health systems as complex adaptive systems that are multilevel and interconnected, and involve nonlinear interactions between people and organizations, operating within a loosely bounded network. Data collection will comprise semistructured interviews, document reviews, and focus groups. Individual case studies will be conducted and analyzed using inductive thematic analysis. Following this, our comparative analysis will operationalize resource-based theory to compare case study data and generate explanations for our research question. RESULTS: This project was funded from 2020 to 2023. Individual case studies were carried out between November 2020 and August 2022. The comparative case analysis will begin in December 2022 and is expected to conclude in April 2023. Submission of the publication is projected for June 2023. CONCLUSIONS: By investigating health systems as complex adaptive systems and making comparisons across provinces, this study will identify how health systems can improve the delivery of LDKT to patients with kidney failure. Our resource-based theory framework will provide a granular analysis of the attributes and processes that facilitate or create barriers to LDKT delivery across multiple organizations and levels of practice. Our findings will have practice and policy implications and help inform transferrable competencies and system-level interventions conducive to increasing LDKT. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44172.

Living Donor Kidney Transplantation in Quebec: A Qualitative Case Study of Health System Barriers and Facilitators.

Background: Patients with kidney failure represent a major public health burden, and living donor kidney transplantation (LDKT) is the best treatment option for these patients. Current work to optimize LDKT delivery to patients has focused on microlevel interventions and has not addressed interdependencies with meso and macro levels of practice. Objective: We aimed to learn from a health system with historically low LDKT performance to identify facilitators and barriers to LDKT. Our specific aims were to understand how LDKT delivery is organized through interacting macro, meso, and micro levels of practice and identify what attributes and processes of this health system facilitate the delivery of LDKT to patients with kidney failure and what creates barriers. Design: We conducted a qualitative case study, applying a complex adaptive systems approach to LDKT delivery, that recognizes health systems as being made up of dynamic, nested, and interconnected levels, with the patient at its core. Setting: The setting for this case study was the province of Quebec, Canada. Participants: Thirty-two key stakeholders from all levels of the health system. This included health care professionals, leaders in LDKT governance, living kidney donors, and kidney recipients. Methods: Semi-structured interviews with 32 key stakeholders and a document review were undertaken between February 2021 and December 2021. Inductive thematic analysis was used to generate themes. Results: Overall, we identified strong links between system attributes and processes and LDKT delivery, and more barriers than facilitators were discerned. Barriers that undermined access to LDKT included fragmented LDKT governance and expertise, disconnected care practices, limited resources, and regional inequities. Some were mitigated to an extent by the intervention of a program launched in 2018 to increase LDKT. Facilitators driven by the program included advocacy for LDKT from individual member(s) of the care team, dedicated resources, increased collaboration, and training opportunities that targeted LDKT delivery at multiple levels of practice. Limitations: Delineating the borders of a "case" is a challenge in case study research, and it is possible that some perspectives may have been missed. Participants may have produced socially desirable answers. Conclusions: Our study systematically investigated real-world practices as they operate throughout a health system. This novel approach has cross-disciplinary methodological relevance, and our findings have policy implications that can help inform multilevel interventions to improve LDKT.

Contexte: Les patients atteints d'insuffisance rénale représentent un lourd fardeau pour la santé publique, et la transplantation rénale provenant d'un donneur vivant (TRDV) est la meilleure option de traitement pour ces patients. Les travaux actuels visant à optimiser la TRDV chez les patients ont été limités à des interventions de niveau micro et n'ont pas abordé les interdépendances avec les niveaux méso et macro de la pratique. Objectifs: Notre objectif était d'apprendre d'un système de santé présentant un taux historiquement bas de TRDV pour arriver à déterminer les facteurs qui constituent un facilitateur ou un frein à la TRDV. Plus précisément, nous souhaitions, par le biais d'interactions entre les niveaux macro, méso et micro de la pratique, comprendre la façon dont la TRDV est organisée. Nous souhaitions également déterminer quels attributs et processus du système de santé constituent des facilitateurs ou des freins à la TRDV pour les patients atteints d'insuffisance rénale. Conception: Nous avons appliqué une approche de systèmes adaptatifs complexes à la TRDV pour mener une étude de cas qualitative qui reconnaît que les systèmes de santé sont constitués de niveaux dynamiques, imbriqués et interconnectés, où le patient est au cœur des interventions. Cadre: Cette étude de cas avait pour cadre la province de Québec (Canada). Participants: 32 intervenants clés de tous les niveaux du système de santé, notamment des professionnels de la santé, des leaders impliqués dans la gestion de la TRDV, des donneurs vivants d'un rein et des receveurs de rein. Méthodologie: Des entrevues semi-structurées avec 32 intervenants clés et un examen des documents ont été entrepris entre février 2021 et décembre 2021. L'analyse thématique inductive a servi à générer les thèmes. Résultats: De façon générale, nous avons constaté qu'il existait des liens solides entre la TRDV et les attributs et processus du système, et que les obstacles étaient plus nombreux que les facilitateurs. Les obstacles freinant l'accès à la TRDV comprenaient la gouvernance et l'expertise fragmentées en lien avec la TRDV, les pratiques de soins déconnectées, les ressources limitées et les inégalités régionales. Certains de ces obstacles ont été atténués dans une certaine mesure par l'intervention d'un programme lancé en 2018 pour accroître la TRDV. Les facilitateurs soutenus par le programme comprenaient la promotion de la TRDV par des membres individuels de l'équipe de soins, la disponibilité de ressources dédiées, une collaboration accrue et les possibilités de formation ciblant la TRDV à plusieurs niveaux de pratique. Limites: La délimitation des frontières de ce que constitue un « cas ¼ est un défi dans la recherche d'études de cas; il est ainsi possible que certaines perspectives aient été manquées. Les participants pourraient avoir donné des réponses socialement souhaitables. Conclusion: Notre étude a examiné systématiquement les pratiques en contexte réel, tel qu'elles fonctionnent dans l'ensemble d'un système de santé. Cette nouvelle approche présente une pertinence méthodologique interdisciplinaire et nos conclusions ont des implications politiques qui pourraient aider à orienter des interventions à plusieurs niveaux pour améliorer la TRDV.

Identifying Modifiable System-Level Barriers to Living Donor Kidney Transplantation.

Introduction: Studying existing health systems with variable living donor kidney transplantation (LDKT) performance and understanding factors that drive these differences can inform comprehensive system-level approaches to improve LDKT. We aimed to quantify previously identified barriers and estimate their association with LDKT performance. Methods: We conducted a cross-sectional survey of health professionals (HPs). Statements, rated on a Likert scale of "strongly disagree" to "strongly agree", captured themes related to communication; role perception; HP's education, training and comfort; attitudes; referral process; patient; as well as resources and infrastructure. The percentage who agreed with these statements was analyzed and compared by LDKT performance (living donation rates higher or lower than the national average) and participant characteristics. Results: We obtained 353 complete responses. Themes related to poor communication, poor role perception, and HPs education or training or comfort emerged as barriers to LDKT. When compared with HPs from high-performing provinces, those from low-performing provinces had lower odds of agreeing that their province promoted LDKT (adjusted odd ratio [aOR] = 0.27, 95% confidence interval [CI]: 0.16-0.48). They also had lower odds of initiating discussions about LDKT (aOR = 0.30, 95% CI: 0.17-0.55), and higher odds of agreeing that the transplant team is best suited to discuss LDKT (aOR = 2.64, 95% CI: 1.60-4.33) and that more resources would increase LDKT discussions (aOR = 2.06, 95% CI: 1.25-3.40). Nonphysician role and less than 10 years of experience were associated with the level of agreement across several themes. Creating guidelines, streamlining evaluations, and improving communication were ranked as priorities to increase LDKT. Conclusion: There are system-level barriers to LDKT and some were more prevalent in low-performing provinces. Interventions to eliminate them should be implemented in conjunction with patient-level interventions as part of a comprehensive system-level approach to increase LDKT.

Perspectives of Kidney Transplant Recipients, Transplant Candidates, and Living Kidney Donors on the Role of Patients' Self-Narratives and Experiences of Creative Writing Workshops: A Qualitative Study.

Background: Kidney transplantation is the best treatment for kidney failure but is associated with medical, psychological, and existential challenges for patients. Patients' experiential knowledge can help other patients facing these challenges. Patients' self-narratives and creative writings are ways to operationalize this experiential knowledge. Creative writing has been described as a therapeutic tool for patients with chronic disease. Over the past year, we conducted creative writing workshops with kidney transplant recipients (KTRs), living kidney donors (LKDs), kidney transplant candidates (KTCs), and professional writers. During these workshops, patients were invited to explore different aspects of their experiences of their transplant or donation journey through narrative-writing, poetry, comic art, and screenwriting. Objective: The objectives of this study were to gather the perspectives of KTRs, KTCs, and LKDs on the role of patients' self-narratives and creative writing, and to collect patients' experiences of the creative writing workshops. Design: Focus groups and individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) kidney transplant program. Participants: KTRs, LKDs, and KTCs attending the CHUM kidney transplant clinic between February 2020 and January 2021. Methods: We conducted 2 focus groups and 8 semi-structured individual interviews with 7 KTRs, 8 LKDs, and 5 KTCs from the CHUM between June and November 2020, before the creative writing workshops. We also conducted 10 semi-structured interviews with 5 KTRs, 1 KTC, and 4 LKDs in March 2021, after their participation in the creative writing workshops. The interviews were recorded and transcribed. Thematic and content analyses were conducted. Results: KTRs, LKDs, and KTCs had multiple significant moments to share from their transplant/donation journey. These moments were highly emotional and marked by uncertainty. The creative writing workshops were described as therapeutic by participants, because they offered a safe space for group-facilitated reflection, including a discovery and learning process, and normalization, relativization, and appreciation of the transplant/donation experience. The creative writing workshops also provided an opportunity to give back to others (helping other patients, promoting kidney donation and continuing this process in the future through the web platform). Limitations: Our participants came from a single French-speaking urban transplant center in Quebec and were highly educated. Conclusion: The study set out to capture the perspectives of KTRs, LKDs, and KTCs through the sharing of self-narratives and their participation in creative writing workshops related to their transplant or donation journey. A website was set up to publish patients' creative writings (https://recitsdudonetdelavie.lorganon.ca/les-recits/). Further study is needed to assess the website's impact on other patients. Trial registration: Not registered.

Contexte: La transplantation rénale est le meilleur traitement pour l'insuffisance rénale. Elle est cependant associée à des défis médicaux, psychologiques et existentiels pour les patients. Connaître l'expérience des patients pourraient aider d'autres patients à faire face à ces défis. Les récits personnels et les Création littéraires des patients sont des moyens de concrétiser cette connaissance expérientielle. La création littéraire a été décrite comme un outil thérapeutique pour les patients atteints de maladies chroniques. Au cours de la dernière année, nous avons organisé des ateliers de Création littéraire avec des receveurs d'une greffe rénale (RGR), des donneurs vivants d'un rein (DVR), des candidats à la transplantation rénale (CTR) et des écrivains professionnels. Au cours de ces ateliers, les participants ont été invités à explorer différents aspects de leur expérience de transplantation ou de don à travers la fiction, la poésie, la bande dessinée et la scénarisation. Objectifs: Cette étude visait à recueillir les points de vue des RGR, des CTR et des DVR sur le rôle des récits personnels et des Créations littéraires des patients. On souhaitait également connaître les expériences vécues par les participants aux ateliers de création littéraire. Conception: Groupes de discussion et entrevues individuelles. Cadre: Le program de transplantation rénale du Center hospitalier de l'Université de Montréal (CHUM). Sujets: Des RGR, DVR et CTR fréquentant la clinique de transplantation rénale du CHUM entre février 2020 et janvier 2021. Méthodologie: Avant les ateliers de création littéaire, nous avons formé deux groupes de discussion et mené huit entrevues individuelles semi-structurées auprès de sept RGR, de huit DVR et de cinq CTR du CHUM entre juin et novembre 2020. Nous avons également mené dix entrevues semi-structurées auprès de cinq RGR, d'un CTR et de quatre DVR en mars 2021, après leur participation aux ateliers de création littéraire. Les entrevues ont été enregistrées et transcrites. Des analyses thématiques et des analyses de contenu ont été réalisées. Résultats: Les RGR, les DVR et les CTR avaient plusieurs moments importants de leur parcours de transplantation/don à partager. Des moments très émotifs et marqués par l'incertitude. Les ateliers de création littéraire ont été décrits comme thérapeutiques par les participants, car ils offraient un espace sécuritaire pour une réflexion facilitée par le groupe, y compris un processus de découverte et d'apprentissage, de même que la normalization, la relativisation et l'appréciation de l'expérience de transplantation/don. Les ateliers de création littéraire ont également permis aux participants de redonner aux autres (aider d'autres patients, promouvoir le don de rein, poursuivre le processus par le biais de la plateforme Web). Limites: Nos participants étaient très instruits. Ils provenaient tous d'un seul centre de transplantation québécois francophone situé en milieu urbain. Conclusion: L'étude visait à recueillir les points de vue des RGR, des DVR et des CTR par le partage d'histoires personnelles et la participation à des ateliers création littéraire en lien avec leur parcours de transplantation ou de don. Un site Web a été créé pour publier les créations des participants (https://recitsdudonetdelavie.lorganon.ca/les-recits/). Une étude plus approfondie est nécessaire pour évaluer l'impact du site Web sur d'autres patients. Enregistrement de l'essai: Non enregistré.

Lived Experiences of Patients Receiving Hemodialysis during the COVID-19 Pandemic: A Qualitative Study from the Quebec Renal Network.

Background: Hemodialysis patients have faced unique challenges during the COVID-19 pandemic. They face high risk of death if infected and have unavoidable exposure to others when they come to hospital three times weekly for their life-saving treatments. The objective of this study was to gain a better understanding of the scope and magnitude of the effects of the pandemic on the lived experience of patients receiving in-center hemodialysis. Methods: We conducted semi-structured interviews with 22 patients who were undergoing dialysis treatments in five hemodialysis centers in Montreal from November 2020 to May 2021. Interviews were transcribed and then analyzed using thematic content analysis. Results: Most participants reported no negative effects of the COVID-19 pandemic on their hemodialysis care. Several patients had negative feelings related to forced changes in their dialysis schedules, and this was especially pronounced for indigenous patients in a shared living situation. Some patients were concerned about contracting COVID-19, especially during public transportation, whereas others expressed confidence that the physical distancing and screening measures implemented at the hospital would protect them and their loved ones. Some participants reported that masks negatively affected their interactions with health care workers, and for many others, the pandemic was associated with feelings of loneliness. Finally, some respondents reported some positive effects of the pandemic, including use of telemedicine and creating a sense of solidarity. Conclusions: Patients undergoing hemodialysis reported no negative effects on their medical care but faced significant disruptions in their routines and social interactions due to the COVID-19 pandemic. Nevertheless, they showed great resilience in their ability to adapt to the new reality of their hemodialysis treatments. We also show that studies focused on understanding the lived experiences of indigenous patients and patients from different ethnic backgrounds are needed in order reduce inequities in care during public health emergencies.

Health system barriers and facilitators to living donor kidney transplantation: a qualitative case study in British Columbia.

BACKGROUND: In patients with kidney failure, living donor kidney transplantation (LDKT) is the best treatment option; yet, LDKT rates have stagnated in Canada and vary widely across provinces. We aimed to identify barriers and facilitators to LDKT in a high-performing health system. METHODS: This study was conducted using a qualitative exploratory case study of British Columbia. Data collection, conducted between October 2020 and January 2021, entailed document review and semistructured interviews with key stakeholders, including provincial leadership, care teams and patients. We recruited participants via purposive sampling and snowballing technique. We generated themes using thematic analysis. RESULTS: After analysis of interviews conducted with 22 participants (5 representatives from provincial organizations, 7 health care providers at transplant centres, 8 health care providers from regional units and 2 patients) and document review, we identified the following 5 themes as facilitators to LDKT: a centralized infrastructure, a mandate for timely intervention, an equitable funding model, a commitment to collaboration and cultivating distributed expertise. The relationship between 2 provincial organizations (BC Transplant and BC Renal Agency) was identified as key to enabling the mandate and processes for LDKT. Five barriers were identified that arose from silos between provincial organizations and manifested as inconsistencies in coordinating LDKT along the spectrum of care. These were divided accountability structures, disconnected care processes, missed training opportunities, inequitable access by region and financial burden for donors and recipients. INTERPRETATION: We found strong links between provincial infrastructure and the processes that facilitate or impede timely intervention and referral of patients for LDKT. Our findings have implications for policy-makers and provide opportunities for cross-jurisdictional comparative analyses.

Kidney transplant candidates' and recipients' perspectives on the decision-making process to accept or refuse a deceased donor kidney offer: Trust and graft survival matter.

BACKGROUND: The decision to accept a kidney from a deceased donor can be a difficult one. This study aims to capture the perspectives of transplant candidates (TCs) and kidney transplant recipients (KTRs) on the decision-making process when a deceased kidney is offered. METHODS: We conducted six focus groups with KTRs and TCs. The content of the focus groups was analyzed using the qualitative thematic method. RESULTS: KTRs reported that the experience of being offered a kidney could be difficult because of the circumstances of the offer and unpreparedness to participate in the discussion. Both KTRs and TCs trusted the medical expertise. Age and having experience with dialysis could influence the decision to accept an offer. In order to engage in the discussion, patients wanted to obtain estimates of expected graft survival. Patients did not express interest for a web-based calculator for patient use, but expected transplant physicians to summarize and explain the information that would impact graft survival time. CONCLUSION: TCs and KTRs wanted to be involved in the decision to accept a deceased donor kidney. Tools that can help physicians communicate the risks and benefits of accepting an offer could improve patient participation in the decision-making process.

Compatible Donor and Recipient Pairs' Perspectives on Participation in Kidney Paired Donation Programs: A Mixed-Methods Study.

BACKGROUND: Compatible pair participation in kidney paired donation (KPD) may increase the likelihood of finding suitable matches for all registered pairs. Retrospective studies have shown variable enthusiasm for participating in KPD in compatible pairs. OBJECTIVE: The study objective was to gather potential living donor (PLD) and transplant candidate (TC) perspectives on compatible pair participation in KPD. DESIGN: Surveys and qualitative interviews. SETTING: Three transplant programs in Canada: Centre hospitalier de l'Université de Montréal in Montreal (Québec), Vancouver General Hospital, and St. Paul's Hospital in Vancouver (British Columbia). PATIENTS: Both PLDs and TCs undergoing evaluation for donation/transplantation between 2016 and 2018 at 3 transplant programs in Canada. METHODS: Descriptive statistical analysis was performed for the results of the survey and thematic and content analysis method was used for the content of the qualitative interviews. RESULTS: A total of 116 PLDs and 111 TCs completed surveys and an additional 18 PLDs and 17 TCs underwent semi-directed interviews. Of those surveyed, 61.2% of PLDs and 76.6% of TCs reported a willingness to participate in KPD as a compatible pair. The possibility of a more optimally matched kidney for the TC and policies ensuring prioritization of the TC for repeat transplantation in the event of early graft failure increased willingness to participate in KPD. Major concerns expressed during the interviews included the desire to retain the emotional bond of directed donation, the fear of chain breaks or donor reneging, delays in transplantation, and additional travel associated with participation in KPD. LIMITATION: The limitations of this study are that it was conducted in only 3 Canadian transplant programs and that the interviews and surveys were in French and in English. As a consequence, the results may not be reflective of the views of individuals not living in these 2 provinces and from ethnic minority populations. CONCLUSION: Most of the compatible PLDs and TCs surveyed were willing to participate in KPD. Ensuring timely transplantation and a more optimal match for TCs and offering a policy of reciprocity to ensure timely repeat transplantation for compatible recipients if their allograft fails post KPD transplant may further increase compatible pair participation in KPD.

CONTEXTE: La participation de paires d'individus compatibles au don croisé d'un rein (DCR) peut augmenter la probabilité de trouver des donneurs et receveurs compatibles pour tous les individus enregistrés. Des études rétrospectives ont montré un enthousiasme variable des paires d'individus compatibles à participer au DCR. OBJECTIFS: Cette étude visait à recueillir les points de vue de donneurs vivants potentiels et de candidats à la greffe sur la participation de paires d'individus compatibles au DCR. TYPE D'ÉTUDE: Sondages et interviews qualitatives. CADRE: Trois programmes de transplantation canadiens : le centre hospitalier de l'Université de Montréal à Montréal (Québec), de même que le Vancouver General Hospital et le St Paul's Hospital de Vancouver (Colombie-Britannique). SUJETS: Les donneurs vivants potentiels (DVP) et les candidats à la greffe (CG) ayant fait l'objet d'une évaluation pour un don ou une transplantation dans trois programmes de transplantation canadiens entre 2016 et 2018. MÉTHODOLOGIE: Une méthode d'analyse statistique descriptive a servi à analyser les résultats du sondage, tandis que le contenu des interviews qualitatives a été analysé à l'aide de méthodes d'analyse thématique et de contenu. RÉSULTATS: En tout, 116 DVP et 111 CG ont répondu au sondage, alors que 18 DVP et 17 CG supplémentaires ont été rencontrés pour des entrevues semi-dirigées. Parmi les répondants au sondage, 61,2 % des DVP et 76,6 % des CG ont indiqué qu'ils seraient prêts à participer au DCR en tant que membre d'une paire d'individus compatibles. La possibilité pour le CG d'obtenir un rein avec un meilleur match et les politiques assurant la priorisation du CG pour une transplantation répétée en cas d'échec précoce de la greffe ont augmenté la volonté de participer au DCR. Parmi les principales préoccupations exprimées au cours des entrevues figuraient notamment le désir de préserver le lien émotionnel du don dirigé, la peur d'une rupture dans la chaîne, la peur du renoncement du donneur, les possibles retards pour la transplantation et les déplacements supplémentaires associés à une participation au DCR. LIMITES: L'étude est limitée par le fait qu'elle n'a été réalisée que dans trois programmes canadiens de transplantation et que les entrevues et les sondages n'étaient menés qu'en français et en anglais. Les résultats pourraient par conséquent ne pas refléter les opinions des personnes issues des minorités ethniques ou ne résidant pas dans ces deux provinces. CONCLUSION: La majorité des DVP et des CG compatibles qui ont été interrogés étaient ouverts à participer au don croisé d'un rein. Il est possible d'augmenter la participation de paires d'individus compatibles au don croisé d'un rein. Pour ce faire, on doit assurer une par un meilleur match optimale et une greffe en temps opportun pour les candidats à la transplantation; il faut également offrir une politique de réciprocité assurant une greffe répétée en temps opportun aux receveurs compatibles dont l'allogreffe échoue après un DCR.

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.

Peer Mentoring as an Avenue to Explore in Kidney Transplantation: Kidney Transplant Recipients' Perspectives on Peer Mentoring.

Kidney transplant recipients (KTRs) face numerous challenges following transplantation. Given that healthcare professionals do not necessarily have first-hand experience living with or waiting for a transplant, it may be hard for them to communicate with and help patients when it comes to transplant-related issues. KTRs have experiential knowledge, which could enable them to help other patients going through similar situations. Peer mentoring involves pairing mentees with individuals who have had similar experiences, to provide training, information, and emotional support. The aim of this study was to gather KTRs' perspectives on a potential peer mentoring program. METHODS: A total of 13 KTRs took part in focus groups between June 2017 and March 2018. The focus group discussions were digitally recorded and transcribed. The content of the interviews was analyzed using the qualitative data analysis method, including deductive and inductive coding techniques. RESULTS: All participants were supportive of a peer mentoring program as it is a convenient and user-friendly way to address posttransplant concerns. Peer mentoring was also viewed as a way to communicate with other patients who have gone through similar experiences and relieve the loneliness and isolation some participants experienced subsequent to their transplant. Young female participants expressed a need to connect with other young, female transplant recipients to be able to discuss issues such as pregnancy, sexuality, and body image. CONCLUSIONS: KTRs who participated in this study expressed a need for the development of a peer mentoring program to help other KTRs face the medical (including cardiovascular disease), social, and psychological challenges associated with kidney transplantation. The results of this study are the first step in the development of a structured peer mentoring program at the kidney transplantation clinic.

Québec health care professionals' perspectives on organ donation after medical assistance in dying.

BACKGROUND: Medical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients' autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec professionals' perspectives on the ethical issues related to organ donation after MAID. METHODS: We conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators. RESULTS: The participants were all favourable to organ donation after MAID in order to respect patients' autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors' reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation. CONCLUSION: Organ donation after MAID was widely accepted among the participants, based on the principle of respect for the donor's autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders' perspectives on this issue as well as patients' and families' experiences of organ donation after MAID.

Canadian Society of Transplantation White Paper: Ethical and Legal Considerations for Alcohol and Cannabis Use in Solid Organ Listing and Allocation.

Alcohol and cannabis use as a contraindication to organ transplantation is a controversial issue. Until recently, patients in Canada with alcohol-associated liver disease were required to demonstrate abstinence for 6 mo to receive a liver transplant. There is no equivalent rule that is applied consistently for cannabis use. There is some evidence that alcohol and cannabis use disorder pretransplant could be associated with worse outcomes posttransplantation. However, early liver transplantation for patients with alcohol-associated liver disease in France and in the United States has led to challenges of the 6-mo abstinence rule in Canada in the media. It has also resulted in several legal challenges arguing that the rule violates human rights laws regarding discrimination in the provision of medical services and that the rule is also unconstitutional (this challenge is still before the court). Recent legalization of cannabis use for adults in Canada has led to questions about the appropriateness of limiting transplant access based on cannabis use. The ethics committee of the Canadian Society of Transplantation was asked to provide an ethical analysis of cannabis and alcohol abstinence policies. Our conclusions were as follows: neither cannabis use nor the 6-mo abstinence rule for alcohol use should be an absolute contraindication to transplantation, and transplant could be offered to selected patients, further research should be conducted to ensure evidence-based policies; and the transplant community has a duty not to perpetuate stigma associated with alcohol and cannabis use disorders.