Marie-Chantal Fortin’s research while affiliated with University of Quebec in Montreal and other places

Background Kidney transplant recipients with graft failure (KTR-GF) and those with a failing graft are an increasingly prevalent group of patients. Their clinical management is complex, and outcomes are worse than transplant naïve patients on dialysis. In 2023, the Kidney Disease: Improving Global Outcomes (KDIGO) organization reported findings from a controversies conference and identified several clinical practice priorities for KTR-GF. Objective As an exercise in needs assessment, we aimed to collate and summarize current practices in adult Canadian kidney transplant programs around these KDIGO-identified clinical practice priorities. Design Environmental scan followed by content analysis. Setting Canadian adult kidney transplant programs. Measurements We categorized the themes of our content analysis around 7 clinical practice priorities: (1) determining prognosis and kidney failure trajectory; (2) immunosuppression management; (3) management of medical complications; (4) preparing for return to dialysis; (5) evaluation and listing for re-transplantation; (6) management of psychological effects; and (7) transition to supportive care. Methods We solicited documents that identified each program’s current care practices for KTR-GF or patients with a failing graft, including policies, procedures, pathways, and protocols. A content analysis of documents and informal correspondence (email or telephone conversations) was done to extract information surrounding the 7 practice priorities. Results Of the 18 programs contacted, 12 transplant programs participated in this study and a document from a provincial organization (where 2 non-responding programs are located) was procured and included in this analysis. Overall, practice gaps and discrepancies were noted. Many participants highlighted the lack of evidence or consensus to guide the management of KTR-GF as the key reason. Immunosuppression management was the most frequently addressed priority. Six programs and the provincial document recommended a nuanced approach to immunosuppressant management based on clinical factors and re-transplant candidacy. Two programs used the Kidney Failure Risk Equation and eGFR to determine referral trajectories and prepare patients for return to dialysis. Exact processes outlining medical management during the transition were not found except for nephrectomy indications and in 1 program that has a specific transition clinic for KTR-GF. All programs have a formal or informal policy that KTR-GF should be assessed for re-transplantation. Referrals for psychological support and transition to supportive care were made on a case-by-case basis. Limitations Our environmental scan was at risk of non-response bias and restricted to transplant programs. Kidney clinics and dialysis units may have relevant policies and procedures that were not examined. Conclusion The findings from our environmental scan suggest gaps in care and potential areas for quality improvement, including a lack of multidisciplinary care, structured dialysis preparation and psychological support. There is also a need to prioritize research that generates evidence to guide the management of KTR-GF and contributes to the aim of developing clinical practice guidelines.

Introduction Kidney transplant recipients with graft failure are a growing cohort of patients who experience high morbidity and mortality. Limited evidence guides their care delivery and patient perspective to improve care processes is lacking. We conducted an in-depth exploration of how individuals experience graft failure, and the specific research question was: “What impact does the loss of an allograft have on their lives?” Methods We adopted an interpretive descriptive methodological design. Semistructured in-depth narrative interviews were conducted with adult recipients who had a history of ≥1 graft failure. Data were collected until data saturation was achieved and analyzed using an inductive and thematic approach. Results Our study included 23 participants from 6 provinces of Canada. The majority were on dialysis and not waitlisted for retransplantation (60.9%). Our thematic analysis identified that the lives of participants were impacted by a range of tangible and experiential losses that go beyond the loss of the transplant itself. The themes identified include loss of control, loss of coherence, loss of certainty, loss of hope, loss of quality of life, and loss of the transplant team. Although many perceived that graft failure was inevitable, the majority were unprepared. The confusion about eligibility for retransplantation appears to contribute to these experiences. Conclusion Individuals with graft failure experience complex mental and emotional challenges which may contribute to poor outcomes. The number of patients with graft failure globally is increasing and our findings can help guide practices aimed at supporting and guiding them toward self-management and adaptive coping.

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.

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.

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.

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.

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 three 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 multi-level and interconnected, and involve non-linear interactions between people and organizations, operating within a loosely bounded network. Data collection will comprise of semi-structured 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.

Background Moral questions are vital questions because they concern what is esteemed to be the best action, the best choice and, ultimately, the best life to live. Health ethics which aims to address these moral questions has contributed to moving ethics toward more experience-based and user-oriented ethics theory and methodology. Despite this, current approaches remain an incomplete lever for human development and flourishing. This context led us to imagine and develop the stance of a “living ethics”, a radically participatory and situated form of ethics which we describe in this inaugural collective and programmatic paper. Methods We followed a participatory discussion and writing process known as instrumentalist concept analysis. Initial informal local consultations were undertaken about pragmatic ethics, and from these conversations emerged the current project. An exploratory literature review was undertaken, and a diverse working group of 21 co-authors was assembled. The working group held a total of 8 workshop-like meetings supported by prior reading and iterative revision of a shared draft document accessible through an online platform. Meetings were video-recorded and transcribed to support this process. Four subgroups were created to further the working group’s reflections in specific domains of health ethics. Results In its first sense, a living ethics designates a form of ethics attentive to human experience and the role played by morality in human existence. In its second sense, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to promote the engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics bears specific theoretical, methodological, and practical implications in various areas of health ethics activity such as clinical and organizational ethics, health policy and public health, health ethics research, and learning and teaching health ethics. Conclusions Living ethics encourages meaningful participation of stakeholders and reflects a commitment to the existential nature of moral affairs. Looking forward, there is a need for ongoing dialogue about the nature of living ethics and the methodological practices coherent with this orientation. We hope to build on this idea to initiate collaborative projects locally and internationally.