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.

Stakeholder perspectives on ethical and trustworthy voice AI in health care.

Objective: Voice as a health biomarker using artificial intelligence (AI) is gaining momentum in research. The noninvasiveness of voice data collection through accessible technology (such as smartphones, telehealth, and ambient recordings) or within clinical contexts means voice AI may help address health disparities and promote the inclusion of marginalized communities. However, the development of AI-ready voice datasets free from bias and discrimination is a complex task. The objective of this study is to better understand the perspectives of engaged and interested stakeholders regarding ethical and trustworthy voice AI, to inform both further ethical inquiry and technology innovation. Methods: A questionnaire was administered to voice AI experts, clinicians, scholars, patients, trainees, and policy-makers who participated at the 2023 Voice AI Symposium organized by the Bridge2AI-Voice AI Consortium. The survey used a mix of Likert scale, ranking and open-ended questions. A total of 27 stakeholders participated in the study. Results: The main results of the study are the identification of priorities in terms of ethical issues, an initial definition of ethically sourced data for voice AI, insights into the use of synthetic voice data, and proposals for acting on the trustworthiness of voice AI. The study shows a diversity of perspectives and adds nuance to the planning and development of ethical and trustworthy voice AI. Conclusions: This study represents the first stakeholder survey related to voice as a biomarker of health published to date. This study sheds light on the critical importance of ethics and trustworthiness in the development of voice AI technologies for health applications.

The Use of Kidneys With Lower Longevity From Deceased Donors to Improve Access to Preemptive Renal Transplantation for Elderly Patients: A Qualitative Study.

Background: There is a gap between the number of patients waiting for a transplant and the number of kidneys available. Some deceased donor kidneys are currently nonutilized, as medical teams fear that they will experience suboptimal graft survival. However, these organs could provide an acceptable therapeutic option if they were allocated for preemptive kidney transplantation in elderly candidates. Objective: This project aims to gather patients' perspectives on the allocation of kidneys with lower longevity for preemptive kidney transplantation in elderly patients. Design: Individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) chronic kidney disease (CKD) clinic. Participants: Patients aged between 64 and 75 years with CKD G4-5 ND, followed at the CHUM and who have not initiated dialysis yet. Methods: Between March and July 2023, we conducted 14 individual interviews with patients aged between 64 and 75 years who had CKD G4-5 ND and were followed at the CHUM. The interviews were digitally recorded and transcribed. Thematic analysis was conducted. Results: Most participants were in favor of using kidneys with lower longevity to increase their access to transplantation, improve their quality of life, enable accelerated transplantation, and avoid dialysis. Patients also wanted to be engaged in the decision-making process, underlining the importance of informed consent. Although the use of kidneys with lower longevity offers the hope of returning to "normal" life, some patients were concerned about the risk of reduced graft survival and the need for a subsequent kidney transplant. In these cases, patients were interested in using mitigation strategies, such as prioritization for kidney transplantation from standard donors in case of early graft loss associated with receiving kidneys with lower longevity. They also recommended the development of a separate waiting list for patients consenting to preemptive transplantation with kidneys with lower longevity. Limitations: This study was conducted in only 1 nephrology clinic in the province of Quebec with French-speaking patients. Consequently, the results may not be generalizable to other populations, including ethnic minorities. Conclusion: The use of kidneys with lower longevity for preemptive kidney transplantation appears to be an interesting option for elderly kidney transplant candidates. However, patient information and participation in the decision-making process are essential. Moreover, organ donation organizations and transplant programs should develop a separate waitlist for transplant candidates who have preconsented to receive organ offers of deceased donor kidneys with lower longevity. Trial registration: Not registered.

Mise en contexte: Il existe un écart entre le nombre de patients en attente d'une greffe et le nombre de reins disponibles. À l'heure actuelle, un certain nombre de reins de donneurs décédés ne sont pas utilisés, car les équipes médicales craignent que la survie des greffons ne soit pas optimale. Ces organes pourraient toutefois constituer une option thérapeutique acceptable s'ils étaient attribués à des candidats âgés pour une transplantation pré-emptive. Objectifs de l'étude: Ce projet vise à connaître la position des patients quant à la transplantation pré-emptive de reins jugés de moindre longévité chez des candidats âgés. Conception: Entretiens individuels. Cadre: La clinique d'insuffisance rénale chronique du Center hospitalier de l'Université de Montréal (CHUM). Sujets: Des patients âgés de 64 à 75 ans atteints d'IRC G4-5 suivis au CHUM et n'ayant pas encore amorcé la dialyse. Méthodologie: Entre mars et juillet 2023, nous avons mené 14 entretiens individuels avec des patients de 64 à 75 ans non dialysés atteints d'IRC G4-5 suivis au CHUM. Les entrevues ont été enregistrées sous forme numérique, puis transcrites. Une analyze thématique a été effectuée. Résultats: La plupart des personnes interrogées étaient en faveur de l'utilisation de reins de moindre longévité en vue d'augmenter leur accès à la transplantation, d'améliorer leur qualité de vie, d'accélérer la transplantation et d'éviter la dialyse. Les patients souhaitaient également participer au processus décisionnel, ce qui met en lumière l'importance du consentement éclairé. Bien que l'utilisation de reins de moindre longévité offre l'espoir d'un retour à une vie « normale ¼, certains patients s'inquiétaient du risque de survie réduite du greffon et, dès lors, de l'éventuelle nécessité d'une nouvelle greffe. Dans ces cas, les personnes interrogées étaient intéressées par des stratégies d'atténuation comme une priorité donnée à la transplantation de reins provenant de donneurs standards en cas de perte précoce du greffon liée au fait d'avoir reçu un rein de moindre longévité. Les personnes répondantes ont également proposé l'établissement d'une liste d'attente distincte pour les patients qui consentent à une transplantation pré-emptive avec des reins de moindre longévité. Limites de l'étude: Cette étude a été menée dans une seule clinique de néphrologie au Québec auprès de patients francophones. Par conséquent, les résultats pourraient ne pas être généralisables à d'autres populations, notamment à des personnes issues de minorités ethniques. Conclusion: L'utilisation de reins de moindre longévité pour la transplantation rénale pré-emptive semble être une option thérapeutique intéressante pour les candidats âgés. Toutefois, il est essentiel que les patients soient bien informés et qu'ils participent au processus décisionnel. Enfin, les organismes de don d'organes et les programs de transplantation devraient établir une liste d'attente distincte pour les candidats ayant préalablement consenti à recevoir des offres d'organes pour des reins de moindre longévité provenant de donneurs décédés.

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.

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.

Harvey and Gurvir's Law: Ontario Bill for Quality Prenatal Information about Down Syndrome: Terminology, Feasibility, and Ethical Issues.

Harvey and Gurvir's Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing.

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.