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Living kidney donors (LKDs) undertake a complex and multifaceted journey when pursuing donation and have several unmet healthcare needs. A comprehensive understanding of these needs across their entire donation trajectory can help develop a patient-centered care model. We conducted a scoping review to synthesize empirical evidence, published since 2000, on LKDs' experiences with healthcare from when they decided to pursue donation to postdonation care, and what they reported as their care needs. We categorized them according to the 8 Picker principles of patient-centered care. Of the 4514 articles screened, 47 were included. Ample literature highlighted the need for (1) holistic, adaptable, and linguistically appropriate approaches to education and information; (2) systematic, consistent, and proactive coordination and integration of care; and (3) self-management and preparation to optimize perioperative physical comfort. Some literature highlighted the need for (4) better continuity and transition of care postdonation. Two key unmet needs were the lack of (5) a holistic psychosocial evaluation predonation and predischarge to provide emotional support and alleviation of fear and anxiety; and (6) access to specialty and psychosocial services postdonation especially when adverse events occurred. Limited literature explored the principles of (7) respect for patients' values, preferences, and expressed needs; and (8) involvement of family and friends as caregivers. We summarize several unmet healthcare needs of LKDs throughout their donation journey and highlight knowledge gaps. Addressing them can improve their well-being and experiences, and potentially address inequities in living kidney donation and increase living donor kidney transplantation.

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BACKGROUND: Given the threat of climate change to kidney health and the significant environmental impact of kidney care, calls are increasing for healthcare professionals and organizations to champion climate advocacy and environmentally sustainable kidney care. Yet, little is known about their engagement and existing literature is primarily emerging from high-income countries. METHODS: We conducted a cross-sectional survey to understand the knowledge, attitude, and practice of healthcare professionals on the interconnectedness of climate change and kidney health; to identify personal and organizational initiatives in sustainable kidney care and strategies to increase their engagement; and to compare responses by their country's income level as classified by the World Bank. RESULTS: Participants (n=972) represented 108 countries with 64% from lower- or middle-income countries. Ninety-eight percent believed that climate change is happening, yet <50% possessed knowledge about the impact of climate change on kidney health or the environmental impact of kidney care. Only 14% were involved in climate change and kidney health initiatives (membership, knowledge/awareness, research, advocacy); 22% in sustainable kidney care initiatives (education/advocacy, preventative nephrology, sustainable dialysis, promoting transplant/home therapies, research); and 26% reported organizational initiatives in sustainable kidney care (sustainable general or dialysis practices, preventative/lean nephrology, focused committees). Participants from lower-income countries generally reported higher knowledge and variable level of concern. Engagement in sustainable kidney care did not vary by income level. Guidance/toolkit (79%), continuing education (75%) and opportunities (74%) were the top choices to increase engagement. National initiatives (47%), preventative measures (35%) and research endeavors (31%) were the top avenues for organizational engagement. These varied by income level suggesting that the vision and priorities vary by baseline resource setting. CONCLUSIONS: We have identified knowledge and practice gaps among healthcare professionals on the bidirectional relationship between kidney disease and climate change in a multinational context and several avenues to increase their engagement.

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BACKGROUND: Recent data suggest patients with graft failure had better access to repeat kidney transplantation (re-KT) than transplant-naive dialysis accessing first KT. This was postulated to be because of better familiarity with the transplant process and healthcare system; whether this advantage is equitably distributed is not known. We compared the magnitude of racial/ethnic disparities in access to re-KT versus first KT. METHODS: Using United States Renal Data System, we identified 104 454 White, Black, and Hispanic patients with a history of graft failure from 1995 to 2018, and 2 357 753 transplant-naive dialysis patients. We used adjusted Cox regression to estimate disparities in access to first and re-KT and whether the magnitude of these disparities differed between first and re-KT using a Wald test. RESULTS: Black patients had inferior access to both waitlisting and receiving first KT and re-KT. However, the racial/ethnic disparities in waitlisting for (adjusted hazard ratio [aHR] = 0.77; 95% confidence interval [CI], 0.74-0.80) and receiving re-KT (aHR = 0.61; 95% CI, 0.58-0.64) was greater than the racial/ethnic disparities in first KT (waitlisting: aHR = 0.91; 95% CI, 0.90-0.93; Pinteraction = 0.001; KT: aHR = 0.68; 95% CI, 0.64-0.72; Pinteraction < 0.001). For Hispanic patients, ethnic disparities in waitlisting for re-KT (aHR = 0.83; 95% CI, 0.79-0.88) were greater than for first KT (aHR = 1.14; 95% CI, 1.11-1.16; Pinteraction < 0.001). However, the disparity in receiving re-KT (aHR = 0.76; 95% CI, 0.72-0.80) was similar to that for first KT (aHR = 0.73; 95% CI, 0.68-0.79; Pinteraction = 0.55). Inferences were similar when restricting the cohorts to the Kidney Allocation System era. CONCLUSIONS: Unlike White patients, Black and Hispanic patients with graft failure do not experience improved access to re-KT. This suggests that structural and systemic barriers likely persist for racialized patients accessing re-KT, and systemic changes are needed to achieve transplant equity.

RESUMO

The International Society of Nephrology Global Kidney Health Atlas charts the availability and capacity of kidney care globally. In the North America and the Caribbean region, the Atlas can identify opportunities for kidney care improvement, particularly in Caribbean countries where structures for systematic data collection are lacking. In this third iteration, respondents from 12 of 18 countries from the region reported a 2-fold higher than global median prevalence of dialysis and transplantation, and a 3-fold higher than global median prevalence of dialysis centers. The peritoneal dialysis prevalence was lower than the global median, and transplantation data were missing from 6 of the 10 Caribbean countries. Government-funded payments predominated for dialysis modalities, with greater heterogeneity in transplantation payor mix. Services for chronic kidney disease, such as monitoring of anemia and blood pressure, and diagnostic capability relying on serum creatinine and urinalyses were universally available. Notable exceptions in Caribbean countries included non-calcium-based phosphate binders and kidney biopsy services. Personnel shortages were reported across the region. Kidney failure was identified as a governmental priority more commonly than was chronic kidney disease or acute kidney injury. In this generally affluent region, patients have better access to kidney replacement therapy and chronic kidney disease-related services than in much of the world. Yet clear heterogeneity exists, especially among the Caribbean countries struggling with dialysis and personnel capacity. Important steps to improve kidney care in the region include increased emphasis on preventive care, a focus on home-based modalities and transplantation, and solutions to train and retain specialized allied health professionals.

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INTRODUCTION: Despite the lauded benefits of living kidney donation, there is growing evidence of the challenges that living kidney donors (LKD) encounter in their donation trajectory and gaps in healthcare service provision. However, most of the evidence is derived from research conducted by clinicians or academic investigators. Significantly less attention has been devoted to analyzing unsolicited accounts of LKDs' experiences. METHODS: We conducted a review and synthesis of published unsolicited first-person narratives of LKDs and aimed to synthesize their experiences and identify care needs. Four electronic databases were searched and 27 LKD narratives were included in our final analysis. Thematic synthesis was used to generate themes inductively. RESULTS: Although the majority of LKDs reported the act of donation to be a fulfilling experience, almost 48% reported encountering challenges in the care that they received. Also, 29% of LKDs reported experiencing an adverse clinical event. Five distinct themes emerged surrounding the donation experience and healthcare needs: 1) Educational needs due to perceived lack of transparency and compensating for knowledge gaps; 2) Respect for donor autonomy due to coercive influences from family or healthcare providers, lack of respect for donor preferences and loopholes in the consent process; 3) Unmet care needs related to poor communication with healthcare providers, coordination issues and inconsistent and inadequate long-term care; 4) Unanticipated outcomes due to economic costs and the emotional burden of donation; and 5) Contributing beyond the donation event by advocating for a balanced view of donation and generating support mechanisms. CONCLUSION: In this synthesis of LKDs narratives, important care gaps and the need to advocate for a balanced perspective on living kidney donation were highlighted. Our review underscores the value of patients' own stories as critical evidence that can inform improvement in healthcare service delivery.

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Sex-disaggregated data reveal significant disparities in living kidney donation, with more female than male living kidney donors in most countries and proportions over 60% in some countries. We summarize the present state of knowledge with respect to the potential drivers of this disparity and argue that it is primarily driven by gender-related factors. First, we present the differences between sex and gender and then proceed to summarize the potential medical reasons that have been proposed to explain why males are less likely to be living kidney donors than females, such as the higher prevalence of kidney failure in males. We then present counterarguments as to why biological sex differences are not enough to explain lower living kidney donation among males, such as a higher prevalence of chronic kidney disease among females, which could affect donation rates. We argue that gender differences likely provide a better explanation as to why there are more women than men living kidney donors and explore the role of economic and social factors, as well as gender roles and expectations, in affecting living kidney donation among both men and women. We conclude with the need for a gender analysis to explain this complex psychosocial phenomenon in living kidney donation.

Assuntos

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BACKGROUND: Evidence suggests that older patients are less frequently placed on the waiting list for kidney transplantation (KT) than their younger counterparts. The trends and magnitude of this age disparity in access to first KT and repeat KT (re-KT) remain unclear. METHODS: Using the US Renal Data System, we identified 2 496 743 adult transplant-naive dialysis patients and 110 338 adult recipients with graft failure between 1995 and 2018. We characterized the secular trends of age disparities and used Cox proportional hazard models to compare the chances of listing and receiving first KT versus re-KT by age (18-64 y versus ≥65 y). RESULTS: Older transplant-naive dialysis patients were less likely to be listed (adjusted hazard ratio [aHR] = 0.18; 95% confidence interval [CI], 0.17-0.18) and receive first KT (aHR = 0.88; 95% CI, 0.87-0.89) compared with their younger counterparts. Additionally, older patients with graft failure had a lower chance of being listed (aHR = 0.40; 95% CI, 0.38-0.41) and receiving re-KT (aHR = 0.76; 95% CI, 0.72-0.81). The magnitude of the age disparity in being listed for first KT was greater than that for re-KT ( Pinteraction < 0.001), and there were no differences in the age disparities in receiving first KT or re-KT ( Pinteraction = 0.13). Between 1995 and 2018, the age disparity in listing for first KT reduced significantly ( P < 0.001), but the age disparities in re-KT remained the same ( P = 0.16). CONCLUSIONS: Age disparities exist in access to both first KT and re-KT; however, some of this disparity is attenuated among older adults with graft failure. As the proportion of older patients with graft failure rises, a better understanding of factors that preclude their candidacy and identification of appropriate older patients are needed.

Assuntos

Assuntos

Assuntos

Assuntos

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Every year, over 30,000 healthy individuals globally donate a kidney to a patient with kidney failure. These living kidney donors are at higher risk of some medical complications post-donation when compared with matched controls. Although the absolute risk of these complications is low, appropriate long-term care is essential to allow early detection and timely interventions. Some transplant centers follow living donors long-term, but many recommend that donors regularly see a primary care practitioner post-donation. However, primary care is currently not integrated with transplant centers, and the two often work in silos with little to no channels of communication with each other. As this model of care is suboptimal, existing evidence suggests that post-donation care and follow-up are inadequate. We argue for an integrated model of living donor care with stronger continuity and coordination between primary care and transplant centers that are developed with the input of all relevant stakeholders.

Assuntos

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Rationale: Cryptococcal-immune reconstitution inflammatory syndrome (C-IRIS) is a rare but recognized clinical entity in solid organ transplant recipients, though its clinical course and sequelae remain largely poorly described. Presenting Concerns of the Patient: We present the case of a kidney transplant recipient who presented with headache and fever. A cerebrospinal fluid analysis was performed and found to be compatible with cryptococcal meningitis. After down titration of immunosuppression and antifungal initiation, the patient initially improved. Weeks later, they experienced a sudden deterioration in mental status, prompting admission to the intensive care unit (ICU). Diagnosis: This deterioration was attributed to C-IRIS, which developed following rapid de-escalation of immunosuppression in response to the diagnosis of cryptococcal meningitis. Interventions: The initial episode of C-IRIS responded well to high-dose steroids; however, maintenance immunosuppression was not increased. Outcomes: Within 2 months, the patient presented again to the hospital with a pulmonary infiltrate and multifocal ischemic strokes. Novel Findings: We argue this to be a case of relapsing multisystem C-IRIS, thus expanding the known spectrum of manifestations of C-IRIS in renal transplant recipients. We propose that following the diagnosis of C-IRIS, maintenance immunosuppression be escalated to avoid the risk of relapse and inflammatory-mediated organ dysfunction.

Justification: Le syndrome inflammatoire de reconstitution immunitaire dû au cryptocoque (C-IRIS) est une entité clinique rare, mais reconnue chez les receveurs d'une greffe d'organe solide. Son évolution clinique et les séquelles qu'il engendre demeurent cependant largement mal décrites. Présentation du cas: Nous présentons le cas d'un receveur d'une greffe rénale qui souffrait de céphalées et de fièvre. L'analyze du liquide céphalo-rachidien du patient était compatible avec une méningite cryptococcique. La réduction de la dose du traitement immunosuppresseur et l'initiation d'un traitement antifongique ont d'abord permis d'améliorer l'état général du patient. Son état mental s'est toutefois détérioré quelques semaines plus tard, ce qui a nécessité son admission à l'unité de soins intensifs (USI). Diagnostic: Cette détérioration a été attribuée au C-IRIS, lequel s'est développé à la suite de la désescalade rapide de l'immunosuppression en réponse au diagnostic de méningite cryptococcique. Intervention: L'épisode initial de C-IRIS a bien répondu à une dose élevée de stéroïdes; l'immunosuppression d'entretien n'a cependant pas été augmentée. Résultats: Le patient s'est de nouveau présenté à l'hôpital dans les deux mois suivants avec un infiltrat pulmonaire et des accidents vasculaires cérébraux ischémiques multifocaux. Principales observations: Nous soutenons qu'il s'agit d'un cas de C-IRIS récidivant affectant plusieurs systèmes, ce qui élargit le specter des manifestations connues du C-IRIS chez les transplantés rénaux. Nous suggérons que le traitement immunosuppresseur d'entretien soit intensifié après un diagnostic de C-IRIS afin d'éviter les risques de rechute et de dysfonctionnement des organes à médiation inflammatoire.

Assuntos

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BACKGROUND: Kidney transplant recipients with graft failure are a rapidly rising cohort of patients who experience high morbidity, mortality, and fragmented transitions of care between transplant and dialysis teams. Current approaches to improving care focus on medical and surgical interventions, increasing re-transplantation, and improving coordination between treating teams with little understanding of patient needs and perspectives. METHODS: We undertook a systematic literature review of personal experiences of patients with graft failure. Six electronic and five grey literature databases were searched systematically. Of 4664 records screened 43 met the inclusion criteria. Six empirical qualitative studies and case studies were included in the final analysis. Thematic synthesis was used to combine data that included the perspectives of 31 patients with graft failure and 9 caregivers. RESULTS: Using the Transition Model, we isolated three interconnected phases as patients transition through graft failure: shattering of lifestyle and plans associated with a successful transplant; physical and psychological turbulence; and re-alignment by learning adaptive strategies to move forward. Critical factors affecting coping included multi-disciplinary healthcare approaches, social support, and individual-level factors. While clinical transplant care was evaluated positively, participants identified gaps in the provision of information and psychosocial support related to graft failure. Graft failure had a profound impact on caregivers especially when they were living donors. CONCLUSIONS: Our review reports patient-identified priorities for improving care and can help inform research and guideline development that strives to improve the care of patients with graft failure.

Assuntos

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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.

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Repeat kidney transplantation (re-KT) is the preferred treatment for patients with graft failure. Changing allocation policies, widening the risk profile of recipients, and improving dialysis care may have altered the survival benefit of a re-KT. We characterized trends in re-KT survival benefit over 3 decades and tested whether it differed by age, race/ethnicity, sex, and panel reactive assay (PRA). By using the Scientific Registry of Transplant Recipient data, we identified 25 419 patients who underwent a re-KT from 1990 to 2019 and 25 419 waitlisted counterfactuals from the same year with the same waitlisted time following graft failure. In the adjusted analysis, a re-KT was associated with a lower risk of death (adjusted hazard ratio [aHR] = 0.63; 95% confidence interval [CI], 0.61-0.65). By using the 1990-1994 era as a reference (aHR = 0.77; 95% CI, 0.69-0.85), incremental improvements in the survival benefit were noted (1995-1999: aHR = 0.72; 95% CI, 0.67-0.78: 2000-2004: aHR = 0.59; 95% CI, 0.55-0.63: 2005-2009: aHR = 0.59; 95% CI, 0.56-0.63: 2010-2014: aHR = 0.57; 95% CI, 0.53-0.62: 2015-2019: aHR = 0.64; 95% CI, 0.57-0.73). The survival benefit of a re-KT was noted in both younger (age = 18-64 years: aHR = 0.63; 95% CI, 0.61-0.65) and older patients (age ≥65 years: aHR = 0.66; 95% CI, 0.58-0.74; Pinteraction = .45). Patients of all races/ethnicities demonstrated similar benefits with a re-KT. However, it varied by the sex of the recipient (female patients: aHR = 0.60; 95% CI, 0.56-0.63: male patients: aHR = 0.66; 95% CI, 0.63-0.68; Pinteraction = .004) and PRA (0-20: aHR = 0.69; 95% CI, 0.65-0.74: 21-80: aHR = 0.61; 95% CI, 0.57-0.66; Pinteraction = .02; >80: aHR = 0.57; 95% CI, 0.53-0.61; Pinteraction< .001). Our findings support the continued practice of a re-KT and efforts to overcome the medical, immunologic, and surgical challenges of a re-KT.

Assuntos

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

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