Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes

BACKGROUND: Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced. METHODS: We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts. RESULTS: Most deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donor’s health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p = 0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced. CONCLUSION: Expected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group

SERIES:eHealth in primary care. Part 2: Exploring the ethical implications of its application in primary care practice

Background: eHealth promises to increase self-management and personalised medicine and improve cost-effectiveness in primary care. Paired with these promises are ethical implications, as eHealth will affect patients' and primary care professionals' (PCPs) experiences, values, norms, and relationships.Objectives: We argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated.Discussion: (1) EHealth influences dealing with predictive and diagnostic uncertainty. Machine-learning based clinical decision support systems offer (seemingly) objective, quantified, and personalised outcomes. However, they also introduce new loci of uncertainty and subjectivity. The decision-making process becomes opaque, and algorithms can be invalid, biased, or even discriminatory. This has implications for professional responsibilities and judgments, justice, autonomy, and trust. (2) EHealth affects the roles and responsibilities of patients because it can stimulate self-management and autonomy. However, autonomy can also be compromised, e.g. in cases of persuasive technologies and eHealth can increase existing health disparities. (3) The delegation of tasks to a network of technologies and stakeholders requires attention for responsibility gaps and new responsibilities. (4) The triangulate relationship: patient-eHealth-PCP requires a reconsideration of the role of human interaction and 'humanness' in primary care as well as of shaping Shared Decision Making.Conclusion: Our analysis is an essential first step towards setting up a dedicated ethics research agenda that should be examined in parallel to the development and implementation of eHealth. The ultimate goal is to inspire the development of practice-specific ethical recommendations

PIRCHE-II Is Related to Graft Failure after Kidney Transplantation

Individual HLA mismatches may differentially impact graft survival after kidney transplantation. Therefore, there is a need for a reliable tool to define permissible HLA mismatches in kidney transplantation. We previously demonstrated that donor-derived Predicted Indirectly ReCognizable HLA Epitopes presented by recipient HLA class II (PIRCHE-II) play a role in de novo donor-specific HLA antibodies formation after kidney transplantation. In the present Dutch multi-center study, we evaluated the possible association between PIRCHE-II and kidney graft failure in 2,918 donor–recipient couples that were transplanted between 1995 and 2005. For these donors–recipients couples, PIRCHE-II numbers were related to graft survival in univariate and multivariable analyses. Adjusted for confounders, the natural logarithm of PIRCHE-II was associated with a higher risk for graft failure [hazard ratio (HR): 1.13, 95% CI: 1.04–1.23, p = 0.003]. When analyzing a subgroup of patients who had their first transplantation, the HR of graft failure for ln(PIRCHE-II) was higher compared with the overall cohort (HR: 1.22, 95% CI: 1.10–1.34, p < 0.001). PIRCHE-II demonstrated both early and late effects on graft failure in this subgroup. These data suggest that the PIRCHE-II may impact graft survival after kidney transplantation. Inclusion of PIRCHE-II in donor-selection criteria may eventually lead to an improved kidney graft survival

Eigenvalue asymptotics for weighted Laplace equations on rough Riemannian manifolds with boundary

Our topological setting is a smooth compact manifold of dimension two or higher with smooth boundary. Although this underlying topological structure is smooth, the Riemannian metric tensor is only assumed to be bounded and measurable. This is known as a rough Riemannian manifold. For a large class of boundary conditions we demonstrate a Weyl law for the asymptotics of the eigenvalues of the Laplacian associated to a rough metric. Moreover, we obtain eigenvalue asymptotics for weighted Laplace equations associated to a rough metric. Of particular novelty is that the weight function is not assumed to be of fixed sign, and thus the eigenvalues may be both positive and negative. Key ingredients in the proofs were demonstrated by Birman and Solomjak nearly fifty years ago in their seminal work on eigenvalue asymptotics. In addition to determining the eigenvalue asymptotics in the rough Riemannian manifold setting for weighted Laplace equations, we also wish to promote their achievements which may have further applications to modern problems

Electronic Health Self-Management Interventions for Patients With Chronic Kidney Disease: Systematic Review of Quantitative and Qualitative Evidence

Background: Chronic kidney disease (CKD) poses a major challenge to public health. In CKD patients, adequate disease self-management has been shown to improve both proximal and distal outcomes. Currently, electronic health (eHealth) interventions are increasingly used to optimize patients' self-management skills. Objective: This study aimed to systematically review the existing evidence regarding the implementation and effectiveness of eHealth self-management interventions for patients with CKD. Methods: Following a search in 8 databases (up to November 2017), quantitative and qualitative data on process and effect outcomes were extracted from relevant studies. Quality was appraised using the Crowe Critical Appraisal Tool; narrative synthesis was performed to analyze the data extracted. Results: Of the 3307 articles retrieved, 24 (comprising 23 studies) were included in this review; of these, almost half were appraised to be of low to moderate quality. There was considerable heterogeneity in the types of interventions used and the outcomes measured. A total of 10 effect and 9 process outcome indicators were identified. The most frequently reported effect outcome indicators were specific laboratory tests and blood pressure (BP), whereas satisfaction was the most frequently reported process outcome indicator. Positive effects were found for proximal outcomes (eg, BP control and medication adherence), and mixed effects were found for more distal outcomes (eg, quality of life). High feasibility, usability, and acceptability of and satisfaction with eHealth self-management interventions were reported. The determinant ability of health care professionals to monitor and, if necessary, anticipate on patient measurements online was mostly cited to influence patients' adherence to interventions. Conclusions: eHealth self-management interventions have the potential to improve disease management and health outcomes. To broaden the evidence base and facilitate intervention upscaling, more detailed descriptions and thorough analysis of the intervention components used are required. In addition, our review reveals that outcomes closely related to the scope and duration of the intervention implemented are most likely to be impacted. For instance, if a 4-week Web-based training to optimize disease management skills is implemented, the outcome perceived control would more likely be affected than kidney function. Although this seems obvious, most studies evaluate only distal outcomes and thereby fail to capture intervention effects that might contribute to long-term health improvement. We advise future researchers to carefully consider their choice of outcomes based on their sensitivity for change. In this way, we ensure that relevant effects are captured and legitimate conclusions are drawn

Electronic Health Self-Management Interventions for Patients With Chronic Kidney Disease:Systematic Review of Quantitative and Qualitative Evidence

BACKGROUND: Chronic kidney disease (CKD) poses a major challenge to public health. In CKD patients, adequate disease self-management has been shown to improve both proximal and distal outcomes. Currently, electronic health (eHealth) interventions are increasingly used to optimize patients' self-management skills. OBJECTIVE: This study aimed to systematically review the existing evidence regarding the implementation and effectiveness of eHealth self-management interventions for patients with CKD. METHODS: Following a search in 8 databases (up to November 2017), quantitative and qualitative data on process and effect outcomes were extracted from relevant studies. Quality was appraised using the Crowe Critical Appraisal Tool; narrative synthesis was performed to analyze the data extracted. RESULTS: Of the 3307 articles retrieved, 24 (comprising 23 studies) were included in this review; of these, almost half were appraised to be of low to moderate quality. There was considerable heterogeneity in the types of interventions used and the outcomes measured. A total of 10 effect and 9 process outcome indicators were identified. The most frequently reported effect outcome indicators were specific laboratory tests and blood pressure (BP), whereas satisfaction was the most frequently reported process outcome indicator. Positive effects were found for proximal outcomes (eg, BP control and medication adherence), and mixed effects were found for more distal outcomes (eg, quality of life). High feasibility, usability, and acceptability of and satisfaction with eHealth self-management interventions were reported. The determinant ability of health care professionals to monitor and, if necessary, anticipate on patient measurements online was mostly cited to influence patients' adherence to interventions. CONCLUSIONS: eHealth self-management interventions have the potential to improve disease management and health outcomes. To broaden the evidence base and facilitate intervention upscaling, more detailed descriptions and thorough analysis of the intervention components used are required. In addition, our review reveals that outcomes closely related to the scope and duration of the intervention implemented are most likely to be impacted. For instance, if a 4-week Web-based training to optimize disease management skills is implemented, the outcome perceived control would more likely be affected than kidney function. Although this seems obvious, most studies evaluate only distal outcomes and thereby fail to capture intervention effects that might contribute to long-term health improvement. We advise future researchers to carefully consider their choice of outcomes based on their sensitivity for change. In this way, we ensure that relevant effects are captured and legitimate conclusions are drawn

Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

Objectives To support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.Design A basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.Setting One major tertiary referral hospital in Henan province, China.Participants 11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.Results Four themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.Conclusions The limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation

Perceived Barriers and Support Strategies for Reducing Sodium Intake in Patients with Chronic Kidney Disease:a Qualitative Study

Reducing sodium intake can prevent cardiovascular complications and further decline of kidney function in patients with chronic kidney disease. However, the vast majority of patients fail to reach an adequate sodium intake, and little is known about why they do not succeed. This study aims to identify perceived barriers and support strategies for reducing sodium intake among both patients with chronic kidney disease and health-care professionals. A purposive sample of 25 patients and 23 health-care professionals from 4 Dutch medical centers attended 8 focus groups. Transcripts were analyzed thematically and afterwards organized according to the phases of behavior change of self-regulation theory. Multiple themes emerged across different phases of behavior change, including the patients' lack of practical knowledge and intrinsic motivation, the maladaptive illness perceptions and refusal skills, the lack of social support and feedback regarding disease progression and sodium intake, and the availability of low-sodium foods. The results indicate the need for the implementation of support strategies that target specific needs of patients across the whole process of changing and maintaining a low-sodium diet. Special attention should be paid to supporting patients to set sodium-related goals, strengthening intrinsic motivation, providing comprehensive and practical information (e.g., about hidden salt in products), increasing social support, stimulating the self-monitoring of sodium intake and disease progression, and building a supportive patient-professional relationship that encompasses shared decision making and coaching. Moreover, global programs should be implemented to reduce sodium levels in processed foods, introduce sodium-related product labels, and increase consumer awareness

Ellipro scores of donor epitope specific HLA antibodies are not associated with kidney graft survival

In kidney transplantation, donor HLA antibodies are a risk factor for graft loss. Accessibility of donor eplets for HLA antibodies is predicted by the ElliPro score. The clinical usefulness of those scores in relation to transplant outcome is unknown. In a large Dutch kidney transplant cohort, Ellipro scores of pretransplant donor antibodies that can be assigned to known eplets (donor epitope specific HLA antibodies [DESAs]) were compared between early graft failure and long surviving deceased donor transplants. We did not observe a significant Ellipro score difference between the two cohorts, nor significant differences in graft survival between transplants with DESAs having high versus low total Ellipro scores. We conclude that Ellipro scores cannot be used to identify DESAs associated with early versus late kidney graft loss in deceased donor transplants.</p