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

Employment and ability to work after kidney transplantation in the Netherlands:The impact of preemptive versus non-preemptive kidney transplantation

Background: Work can have a major positive impact on health and wellbeing. Employment of kidney transplant recipients (KTR) of working age is much lower than in the general population. The first aim of this study was to examine the impact of a preemptive kidney transplantation (PKT) on employment, in addition to other possible influencing factors. The second aim was to explore differences in work ability, absenteeism and work performance among employed KTR with different types of transplantations. Methods: A cross-sectional survey study was conducted between 2018 and 2019 in nine Dutch hospitals. PKT as potential predictor of employment was examined. Furthermore, work ability, absenteeism and loss of work performance were compared between employed preemptive recipients with a living donor (L-PKT) and non-preemptive recipients with a living donor (L-nPKT) and with a deceased donor (D-nPKT). Results: Two hundred and twenty four KTR participated; 71% reported having paid work. Paid work was more common among PKT recipients (82% vs. 65% in L-nPKT and 55% in D-nPKT) and recipients who were younger (OR .950, 95%CI .913-.989), had no comorbidities (1 comorbidity: OR .397, 95%CI .167-.942; 2 comorbidities: OR .347, 95%CI .142-.844), had less fatigue (OR .974, 95%CI .962-.987) and had mentally demanding work tasks (only in comparison with physically demanding tasks, OR .342, 95%CI .145-.806). If recipients were employed, D-nPKT recipients worked fewer hours (mean 24.6 +/- 11.3 vs. PKT 31.1 +/- 9.6, L-nPKT 30.1 +/- 9.5) and D-nPKT and L-nPKT recipients received more often supplemental disability benefits (32 and 33.3%, respectively) compared to PKT recipients (9.9%). No differences were found for self-reported ability to work, sick leave (absenteeism) and loss of work performance with the exception of limitations in functioning at work. Conclusions: Preemptive kidney transplantation recipients with a kidney from a living donor are employed more often, work more hours per week (only in comparison with D-nPKT) and have a partial disability benefit less often than nPKT recipients. More knowledge regarding treatments supporting sustainable participation in the labor force is needed as work has a positive impact on recipients' health and wellbeing and is also beneficial for society as a whole

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

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

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

Mycophenolic Acid Exposure Determines Antibody Formation Following SARS-CoV-2 Vaccination in Kidney Transplant Recipients:A Nested Cohort Study

Despite (repeated) boosting, kidney transplant recipients (KTRs) may remain at increased risk of severe COVID-19 since a substantial number of individuals remain seronegative or with low antibody titers. In particular, mycophenolic acid use has been shown to affect antibody formation negatively and may be an important modifiable risk factor. We investigated the exposure–response relationship between mycophenolic acid 12-hour area under the curve (AUC0–12h) exposure and seroconversion including antibody titers after vaccination using mRNA-1273 SARS-CoV-2 vaccine (Moderna) in 316 KTRs from our center that participated in the national Dutch renal patients COVID-19 vaccination – long term efficacy and safety of SARS-CoV-2 vaccination in kidney disease patients vaccination study. After two vaccination doses, 162 (51%) KTRs seroconverted. KTRs treated with mycophenolic acid showed less seroconversion and lower antibody titers compared with KTRs without mycophenolic acid (44% vs. 77%, and 36 binding antibody units (BAU)/mL vs. 340 BAU/mL; P &lt; 0.001). The mean mycophenolic acid AUC0–12h exposure was significantly lower in KTRs who seroconverted compared with KTRs who did not (39 vs. 29 mg⋅h/L; P &lt; 0.001). High mycophenolic acid exposure (±90 mg⋅h/L) and no exposure to mycophenolic acid resulted in a seroconversion rate ranging from 10% to 80%. Every 10 mg⋅h/L increase in mycophenolic acid AUC0–12h gave an adjusted odds ratio for seroconversion of 0.87 (95% confidence interval (CI), 0.79–0.97; P = 0.010) and 0.89 (95% CI, 0.85–0.93; P &lt; 0.001) for KTRs on dual and triple maintenance immunosuppressive therapy, respectively. Higher mycophenolic acid AUC0–12h correlated with lower antibody titers (R = 0.44, P &lt; 0.001). This study demonstrates the exposure–response relationship between gold standard mycophenolic acid exposure and antibody formation to support interventional studies investigating mycophenolic acid adjustment to improve antibody formation after further boosting.</p

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

Web-based lifestyle management for chronic kidney disease patients in a clinical setting

Maintaining a proper lifestyle is important for chronic kidney disease patients. This study investigates whether an online lifestyle diary supplementary to the support received in the outpatient clinic can help patients to get to such a lifestyle. A total of 33 participants expressed their willingness to participate in the study. However, 11 of them did not start actually. The remaining 22 participants used an online lifestyle diary. They received limited support regarding practical issues and feedback on lifestyle issues only when they asked explicitly. Questionnaires were used to determine the change in self-efficacy and self-management with regard to lifestyle after four months. Only five participants used the website successfully. They had already developed a good self-efficacy and self-management. A disappointingly large group hardly used the website. The effectiveness of using the website regarding self-efficacy and self-management was therefore limited in this particular situation. Insights of the outpatient clinic’s caregivers and information from the participants partly clarify the factors involved in lifestyle management and coaching. Motivation of the participant appears to be an important factor as well as setting realistic goals. If a patient were to receive feedback on lifestyle issues regularly while working with the website, more satisfactory results might be obtained. Finally, the participant’s (computer) skills and practical support played an important role. Taking these factors into account, the already comprehensive task of lifestyle coaching would be extended with specific new tasks, requiring the necessary skills and motivation of the caregiver

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

Psychological Distress and Self-Management in CKD:A Cross-Sectional Study

Rationale &amp; Objective: Patients with chronic kidney disease (CKD) not receiving dialysis, including kidney transplant recipients, often experience difficulties regarding self-management. An important barrier for adherence to self-management recommendations may be the presence of psychological distress, consisting of depressive and anxiety symptoms. We investigated relationships between psychological distress and adherence to self-management recommendations.Study Design: Cross-sectional online questionnaire data as part of the E-GOAL study.Setting &amp; Participants: Patients with CKD (estimated glomerular filtration rate, 20-89 mL/min/1.73 m2) were recruited from April 2018 to October 2020 at 4 hospitals in The Netherlands and completed online screening questionnaires.Exposures: Psychological distress, depressive symptoms, and anxiety symptoms.Outcomes: Dietary adherence, physical activity, medication adherence, smoking, body mass index, and a CKD self-management index (ie, the sum of 5 binary indicators of nonadherence to the recommended self-management factors).Analytical Approach: Adjusted multivariable regression and ordinal logistic regression analyses.Results: In our sample (N = 460), 27.2% of patients reported psychological distress, and 69.8% were nonadherent to 1 or more recommendations. Higher psychological distress was significantly associated with poorer dietary adherence (βadj, −0.13; 95% CI, −0.23 to −0.04), less physical activity (βadj, −0.13; 95% CI, −0.22 to −0.03), and lower medication adherence (βadj, −0.15; 95% CI, −0.24 to −0.05), but not with smoking and body mass index. Findings were similar for depressive symptoms, whereas anxiety was only associated with poorer dietary and medication adherence. Every 1-point higher psychological distress was also associated with a higher likelihood of being nonadherent to an accumulating number of different recommendations (adjusted OR, 1.04; 95% CI, 1.02-1.07).Limitations: Cross-sectional design, possible residual confounding, and self-report.Conclusions: Many people with CKD experience psychological distress, of whom most have difficulties self-managing their CKD. Given the relationship between psychological distress and adherence to CKD self-management recommendations, behavioral interventions are needed to identify and treat psychological distress as a potential barrier to CKD self-management.Plain-Language Summary: This online questionnaire study investigated relationships between psychological distress and self-management among 460 people with chronic kidney disease. Over a quarter of them reported mild-to-severe psychological distress. Alarmingly, 4 out of 5 patients with psychological distress were also nonadherent to 1 or more self-management recommendations, and higher levels of psychological distress were associated with poorer dietary and medication adherence and lower physical activity. Moreover, patients who suffered from moderate-to-severe distress were relatively more often nonadherent to 3 or more recommendations compared with patients with no or mild distress symptoms. So, it seems that psychological distress can be a barrier for self-management. To support patients in managing chronic kidney disease, researchers and health professionals should not overlook patients’ mental health.</p