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.

Ethical, legal, social, and policy issues of ovarian tissue cryopreservation in prepubertal girls: a critical interpretive review.

PURPOSE: Despite the increasing number of childhood cancer survivors, significant advances in ovarian tissue cryopreservation (OTC) technique and medical societies' recommendations, fertility preservation (FP) and FP discussions are not always offered as a standard of care in the pediatric context. The aim of this literature review is to understand what ethical, legal, social, and policy issues may influence the provision of FP by OTC in prepubertal girls with cancer. METHODS: A critical interpretive review of peer-reviewed papers published between 2000 and January 2023 was conducted, guided by the McDougall's version of the critical interpretive synthesis (Dixon-Woods), to capture recurring concepts, principles, and arguments regarding FP by OTC for prepubertal girls. RESULTS: Of 931 potentially relevant papers, 162 were included in our analysis. Data were grouped into seven thematic categories: (1) risks of the procedure, (2) unique decision-making issues in pediatric oncofertility, (3) counseling, (4) cultural and cost issues, and (5) disposition of cryopreserved reproductive tissue. CONCLUSION: This first literature review focusing on ethical, legal, social, and policy issues surrounding OTC in prepubertal girls highlights concerns in the oncofertility debate. Although OTC is no longer experimental as of December 2019, these issues could limit its availability and the child's future reproductive autonomy. This review concludes that specific actions must be provided to enable the offer of FP, such as supporting families' decision-making in this unique and complex context, and providing pediatric patients universal and full access to free or highly subsidized OTC.

Canadian transplant nephrologists' perspectives on the decision-making process for accepting or refusing a kidney from a deceased organ donor.

BACKGROUND: Kidney transplantation is the best treatment for patients with end-stage renal disease. The decision to accept a kidney from a deceased donor can be a difficult one, especially when organs from high KDPI (>85%) donors are offered. This study aims to capture the perspectives of transplant nephrologists (TNs) on the decision-making process when an organ is offered. METHODS: Fifteen Canadian TNs took part in semi-structured interviews between December 2017 and April 2018. The interviews were digitally recorded, transcribed, and analyzed using the thematic analysis method. RESULTS: The decision to accept a deceased-donor kidney offer is a medical one for the participants. However, transplant candidates could be involved when the offered kidney is from a donor with a KDPI >85% or increased infectious risk donor. The TNs' past experience, comprehensive data on the donor, and education of the transplant candidate could facilitate the decision-making process. A decision aid could also facilitate the decision-making process, but different concerns should be addressed. CONCLUSION: Although accepting a deceased-donor organ offer is often viewed as an opportunity for shared decision-making, participants in this study viewed the decision to accept or refuse an offer as a medical decision with little room for patient participation.

Impact of legislation and public funding on oncofertility: a survey of Canadian, French and Moroccan pediatric hematologists/oncologists.

BACKGROUND: Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer of fertility preservation by Ovarian Tissue Cryopreservation (OTC) for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. METHODS: An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. RESULTS: A total of 39 centers responded (86.6%). OTC is offered by almost all pediatric heme oncologists in France (98%), very few in Canada (5%), and none in Morocco (0%). For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental (54%), it is not available locally (26%) and cost of the technique for the family (14%). 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. CONCLUSIONS: The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy.

The value of non-invasive prenatal testing: preferences of Canadian pregnant women, their partners, and health professionals regarding NIPT use and access.

BACKGROUND: Canadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does. METHODS: In this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated. RESULTS: The paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents' levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results. CONCLUSION: Salient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.

Parents' posthumous use of daughter's ovarian tissue: Ethical dimensions.

In recent years, progress in cancer treatment has greatly increased the chances of recovery. Yet, treatment may have irreversible effects on patients' fertility. In order to protect future fertility, preservation of ovarian tissue may be offered today even to very young girls, involving a surgical procedure that may be performed by minimally invasive laparoscopy, under general anesthesia. However, in the tragic event of a girl's death, questions may arise regarding the possible use of the preserved ovarian tissue by her parents. Should posthumous reproductive use of ovarian tissue without the girl's prior consent (due to her young age) be considered a violation of her rights? On the other hand, can it be argued that it is in the interest of a child who died young to leave a genetic trace through posthumous reproduction, because genetic continuity is in the interest of every human being? After presenting the relevant clinical facts, we explore the ethical dimensions of this possible practice through an analysis of the interests of the deceased, her parents, and the child that may be born posthumously.

Canadian Pregnant Women's Preferences Regarding NIPT for Down Syndrome: The Information They Want, How They Want to Get It, and With Whom They Want to Discuss It.

OBJECTIVE: This study sought to assess Canadian pregnant women's and their partners' preferences for information about non-invasive prenatal testing (NIPT). METHODS: Pregnant women and their partners across Canada were surveyed as part of the Personalized Genomics for prenatal Aneuploidy Screening Using maternal blood (PEGASUS) study. RESULTS: A total of 882 pregnant women and 395 partners participated. Women preferred being informed by a physician (77.2%). They preferred getting information ahead of time, except for information about resources for families with Down syndrome, which they preferred getting with test results. More than half thought that written consent is important (63.7%) and could decide whether to do NIPT on the day they received the information (54.9%). Women preferred to be informed of results by telephone (43.7%) or in person (28%), but they preferred in person if they were considered at high risk for Down syndrome on the basis of the results (76%). The partner was the person whose input was considered most important (62.6%). Partners' preferences were similar, except that partners tended to want information later (at the time of the test or with the results) and felt that their opinion was not considered as highly by health professionals. CONCLUSION: Canadian women want information about NIPT early, in person, by a knowledgeable physician. Partners also want to be informed and involved in the decision-making process.

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.

Governing the futures of non-invasive prenatal testing: An exploration of social acceptability using the Delphi method.

Non-invasive prenatal testing (NIPT) using cell-free DNA (cfDNA) offers numerous benefits to pregnant women and their families. It also raises ethical, legal and social concerns regarding, for instance, the possible effects of a routinization of prenatal genetic testing on free and informed decision-making by prospective parents, and the role of the state in governing its use. Technological advances are allowing cfDNA analyses to detect an increasing number of genetic risks and conditions in the fetus, potentially further exacerbating such concerns. From May 2015 to December 2016, we conducted a three-round Policy Delphi study (NR1 = 61, NR2 = 58, NR3 = 47; overall retention rate = 77.0%) to explore the social acceptability (SA) of current and potential future uses of NIPT in Canada according to participants with relevant professional, research or advocacy expertise. Participants came from four groups: healthcare professionals (NR3 = 14), social sciences and humanities researchers (NR3 = 13), patients/disability rights advocates (NR3 = 14), and cultural/religious communities advocates (NR3 = 6). This paper presents SA criteria and contextual contingencies relevant to the assessment of NIPT's SA according to the group. It also reports what uses (conditions or motives) participants thought should be banned, permitted, publicly funded, or promoted as a public health strategy. According to them, conditions resulting in severe pain or early death, as well as trisomies (13, 18, 21) and sex chromosome abnormalities, should be covered by Canadian public health insurance. However, there was wide agreement that direct-to-consumer NIPT should be legally banned, and that testing for fetal sex for non-medical reasons using NIPT should be either proscribed or discouraged. In addition to identifying areas of consensus, our results point to disagreement regarding, for instance, the required level of governance of whole-genome sequencing and testing for late onset conditions with low penetrance. This study also provides a model for exploring the SA of emerging technologies using the Policy Delphi method.

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.

Noninvasive Prenatal Testing: Views of Canadian Pregnant Women and Their Partners Regarding Pressure and Societal Concerns.

BACKGROUND: Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT. METHODS: A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces. RESULTS: 882 pregnant women and 395 partners completed the survey. 64% of women anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome. CONCLUSIONS: Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation.

Chapitre 9. Oncofertilité et jeunes filles prépubères : Un « droit à un avenir ouvert ¼ ?

Chemotherapy and radiotherapy have increased the life expectancy of cancer patients but may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of treatment on future reproductive autonomy are a major concern. While a few options are open to patients post-puberty, the only option currently open to prepubescent girls is cryopreservation of ovarian tissue and subsequent transplantation. Yet, this procedure raises ethical concerns related to its experimental nature and to risks involved in surgery and general anesthesia. In addition, the risk of malignant cells being reintroduced in the future following autologous transplantation of the ovarian tissue is still poorly evaluated. A number of ethical issues arise surrounding this procedure. While the girl's future reproductive autonomy is at stake, it is important to also consider risks associated with the procedure. Fertility preservation through cryopreservation of ovarian tissue thus raises a conflict between the principles of beneficence and non-maleficence. We argue that the ethical complexity surrounding fertility preservation for prepubescent girls should be resolved by applying the principle of "the child's right to an open future". We propose to consider 'beneficence' through the lens of the reproductive autonomy and her potentialin becoming a genetic parent.

[Chapitre 9. Oncofertility and prepubescent girls: A 'right to an open future'?.] / Chapitre 9. Oncofertilité et jeunes filles prépubères : Un « droit à un avenir ouvert ¼ ?

Chemotherapy and radiotherapy have increased the life expectancy of cancer patients but may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of treatment on future reproductive autonomy are a major concern. While a few options are open to patients post-puberty, the only option currently open to prepubescent girls is cryopreservation of ovarian tissue and subsequent transplantation. Yet, this procedure raises ethical concerns related to its experimental nature and to risks involved in surgery and general anesthesia. In addition, the risk of malignant cells being reintroduced in the future following autologous transplantation of the ovarian tissue is still poorly evaluated. A number of ethical issues arise surrounding this procedure. While the girl’s future reproductive autonomy is at stake, it is important to also consider risks associated with the procedure. Fertility preservation through cryopreservation of ovarian tissue thus raises a conflict between the principles of beneficence and non-maleficence. We argue that the ethical complexity surrounding fertility preservation for prepubescent girls should be resolved by applying the principle of “the child’s right to an open future”. We propose to consider ‘beneficence’ through the lens of the reproductive autonomy and her potentialin becoming a genetic parent.

Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study.

BACKGROUND: Noninvasive prenatal testing is a recent technology that provides some genetic information about the fetus through the analysis of cell-free fetal DNA circulating in maternal blood. We aimed to identify the benefits, challenges and guiding ethical principles most relevant to the clinical integration of noninvasive prenatal testing in Canada, according to experts throughout the country. METHODS: We conducted a 3-round Delphi study involving Canadian experts of contemporary discussions about the ethical and societal implications of prenatal testing and genomic technologies. In round 1, we asked participants to identify clinical benefits and challenges related to the implementation of noninvasive prenatal testing in Canada, and the ethical principles they think should guide it. In round 2, we asked participants to select the most important elements stated by their peers. In round 3, participants were informed of the aggregated results from round 2, and invited to revise or confirm their selection. RESULTS: Round 1 had a participation rate of 20.2%, and involved 61 participants. Subsequent rounds 2 and 3 had retention rates of 95.1% (n = 58) and 84.5% (n = 49), respectively. Through these discussions, we identified 3 lists of benefits (n = 10), challenges (n = 27), and ethical principles (n = 16) prioritized by Canadian experts as being most relevant to the implementation of noninvasive prenatal testing in Canada. INTERPRETATION: Although multiple and diverse potential issues were identified, Canadian experts agreed on 2 sets of requirements for the responsible implementation of noninvasive prenatal testing in Canada. Interdisciplinary appraisals may be instrumental to responsible policy-making related to the implementation of noninvasive prenatal testing in Canada.