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.

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.

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.

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.

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.

Photoacoustic Oxygenation Quantification in Patients with Raynaud's: First-in-Human Results.

The purpose of this study was to investigate the use of photoacoustic imaging for quantifying fingertip oxygenation as an approach to diagnosing and monitoring Raynaud's phenomenon. After 30 min of acclimation to room temperature, 22 patients (7 patients with secondary Raynaud's associated to Scleroderma and 15 healthy controls) provided informed consent to undergo fingertip Doppler imaging and high-frequency photoacoustic imaging before and 5, 15 and 30 min after cold stimulus (submerged hand in a 15 °C water bath for 1 min). High-frequency ultrasound and photoacoustic imaging was performed on the nail bed of each patient's second through fifth finger on their dominant hand, using a Vevo 2100 LAZR system with an LZ-250 probe (Fujifilm VisualSonics, Toronto, ON, Canada) in oxy-hemoglobin quantification mode. During each exam, volumetric data across a 3-mm span of data was acquired to produce a volumetric image of percent oxygenation and hemoglobin concentration. Changes in fingertip oxygenation between Raynaud's patients and healthy volunteers were compared, using receiver operator characteristic (ROC) analysis. Photoacoustic signal was detected in both the nail bed and nailfold in all study participants. Doppler ultrasound resulted in poor differentiation of Raynaud's patients from healthy volunteers, with an area under the ROC curve (Az) of 0.51. Photoacoustic imaging demonstrated improved accuracy at baseline (Az = 0.72), which improved when quantifying normalized changes after cold stimulus (Az = 0.89 5-min post stimulus, Az = 0.91 15-min post stimulus, and Az = 0.85 after stimulus). Oxygenation levels derived using photoacoustic imaging are able to identify patients with Raynaud's and safely evaluate their response to a cold stimulus over time.

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.

Kidney Transplant Recipients' Perspectives on Cardiovascular Disease and Related Risk Factors After Transplantation: A Qualitative Study.

BACKGROUND: Cardiovascular disease (CVD) is a major cause of mortality among kidney transplant recipients (KTRs). These patients have a high prevalence of risk factors, such as hypertension, diabetes, and dyslipidemia. Despite regular medical care, few of them reach the recommended therapeutic targets. The objective of this study is to describe KTRs' perspectives on CVD and related risk factors, as well as their priorities for posttransplant care. METHODS: Twenty-six KTRs participated in a semistructured interview about their personal experience and offered their perspectives on CVD risk factors posttransplant. The interview was digitally recorded and the transcripts were analyzed using a thematic and content methodology. RESULTS: CVD and related risk factors appear to be underestimated and trivialized. Only 2 of 26 patients identified CVD prevention and treatment as a priority. The most important posttransplant priorities identified by patients were related to immunosuppressive drugs (13 of 26), posttransplant follow-up (10) and graft survival (9). However, 21 of 26 patients stated they wanted to be better informed about posttransplant CVD risk factors. CONCLUSIONS: CVD and related risk factors are not a priority for KTRs, and the importance of CVD is underestimated and trivialized. KTRs did recommend that tailored information be provided by various professionals and at several points in the transplantation process. This knowledge will help us develop a new approach to increase awareness of posttransplant CVD and related risk factors.