The Patient Voice : An analysis of free-text responses from the 2023 National Kidney Patient Experience Survey (Kidney PREM)

The Kidney Patient Reported Experience Measure (Kidney PREM) is facilitated annually by the UK Kidney Association and Kidney Care UK. The Kidney PREM has 39 questions covering 13 themes, and in 2023 was available online only. The end of the survey has a free-text question asking participants to comment on any aspect of their care. “If there is any other aspect of your experience of kidney care that you would like to comment on that has not already been covered, please tell us below”. In 2023, 11,647 people with kidney disease took part, with 4,202 (36% of responses) providing a further comment on their care. The number of individuals responding to Kidney PREM increased slightly from 2022, with the number of respondents leaving a comment increasing by 14.5% in part undoubtedly due to the nature of Kidney PREM being online only. This increase in the number of comments improves understanding of patient experience of kidney care and helps to explain the reasons for changes in theme scores in the national report from the previous year. Additionally, 94.1% of responders gave consent for their comments to be passed back to their kidney centre meaning they can be used to help inform quality improvement. Generally, the profile of responders who left a free-text comment matched that of the national Kidney PREM 2023; however, there was a higher representation in the comments from individuals of a Black ethnic heritage (+1.3%). Compared to Kidney PREM 2022, the profile of responders remained consistent. Comments were mapped to the 13 themes of experience that make up the Kidney PREM survey, as the free-text responses align with them well. How the Kidney Team Treats You received the highest number of related comments (2,283), with 66% of comments under this theme being positive. Comments under this theme focused on positive views about staff, thanking them for their care and dedication, as well as mentioning role-specific staff members positively. Comments containing examples of good experiences of care featured highly. Access to the Kidney Team was the second most common theme (721 comments) to emerge from the comments and was predominantly negative (69%). Respondents commented on wanting to see a consultant more frequently, as well as having appointments scheduled with the dietician, social worker and psychologist. Additionally, respondents mentioned the need for better access to the kidney team outside of dialysis sessions. Environment (649 comments), Scheduling and Planning (546 comments), and Transport (525 comments) received comments from individuals wanting better parking facilities, food to be offered during dialysis sessions and for appointments to be more frequent and better organised with no last-minute cancellations. Appointments via the telephone had mixed reviews with some finding them more convenient and a better use of time, whilst others feel they are less person-centred. Waiting times for transport following dialysis sessions continues to be an issue with individuals having to wait longer than an hour on most occasions. Aspects of care such as Needling, Privacy and Dignity, and Sharing Decisions received fewer comments but should still be considered as important areas of care for improvement. Individuals receiving treatment would like more opportunities to discuss what they would like from their care, needling to be performed by competent members of staff, so as to be less painful and for conversations with consultants and nurses to be conducted in private, with those who identify as female having a separate space to dialyse to maintain dignity. Emerging Themes (494 comments) contain comments which do not align with the Kidney PREM themes, including medication and prescriptions, information about diagnosis or specific treatment issues, and ‘dialysis while on holiday’. This year, in alignment with the Kidney PREM survey, two new themes arose from the free-text responses, Overall Experience and Additional Questions. There were 255 comments (98% positive) about overall experience of care, and 353 comments about additional questions that were asked within the Kidney PREM survey such as whether individuals use Patient Knows Best, language barriers and feedback from last year’s Kidney PREM report. Respondents’ characteristics were also reflected in comments: for instance, younger individuals tended to focus on the Environment and older individuals on How the Kidney Team Treats You and Access to the Kidney Team. Those receiving haemodialysis in-centre or at a satellite unit were more likely to comment about the Environment and Transport, with those not receiving Kidney Replacement Therapy (KRT) or who have received a functioning transplant focused on Scheduling and Planning, and Access to the Kidney Team

Striving for sustainable global democracy through a group decision-making process: a critical review of an online course to model transformative praxis

The Journal is an open access journal. All articles are made freely available to readers.Our open access policy is in in accordance with the Budapest Open Access Initiative (BOAI) definition - it means that articles have free availability on the public internet, permitting any users to read, download, copy, distribute, print, search, or link to the full texts of these articles, pass them as data to software, or use them for any other lawful purpose, without financial, legal, or technical barriers other than those inseparable from gaining access to the internet itself.Sustainability is not simply about changing practices but more centrally about agreeing to change practices together’ (Flanagan et al. 2011). To achieve such ends, groups need to improve processes for making complex decisions together. The challenge faced recently in Copenhagen (including a large number of diverse participants in policy discussions) indicates the need for new ways to mprove discursive democracy. Poverty and climate change are ‘wicked’ problems (Rittel and Webber 1984) that comprise many diverse interrelated variables and that have a strong value and emotional dimension. The shortcomings of many approaches to these problems is that they are expert driven, do not involve the public in decision making, and have a narrow focus on technical issues. They do not consider issues in terms of their interrelated complexity with human cultural issues and values. This paper addresses the transboundary conundrum of how to address complex social and environmental challenges while engaging with people's diverse values and emotion

Dual destructive and protective roles of adaptive immunity in neurodegenerative disorders.

Inappropriate T cell responses in the central nervous system (CNS) affect the pathogenesis of a broad range of neuroinflammatory and neurodegenerative disorders that include, but are not limited to, multiple sclerosis, amyotrophic lateral sclerosis, Alzheimer\u27s disease and Parkinson\u27s disease. On the one hand immune responses can exacerbate neurotoxic responses; while on the other hand, they can lead to neuroprotective outcomes. The temporal and spatial mechanisms by which these immune responses occur and are regulated in the setting of active disease have gained significant recent attention. Spatially, immune responses that affect neurodegeneration may occur within or outside the CNS. Migration of antigen-specific CD4+ T cells from the periphery to the CNS and consequent immune cell interactions with resident glial cells affect neuroinflammation and neuronal survival. The destructive or protective mechanisms of these interactions are linked to the relative numerical and functional dominance of effector or regulatory T cells. Temporally, immune responses at disease onset or during progression may exhibit a differential balance of immune responses in the periphery and within the CNS. Immune responses with predominate T cell subtypes may differentially manifest migratory, regulatory and effector functions when triggered by endogenous misfolded and aggregated proteins and cell-specific stimuli. The final result is altered glial and neuronal behaviors that influence the disease course. Thus, discovery of neurodestructive and neuroprotective immune mechanisms will permit potential new therapeutic pathways that affect neuronal survival and slow disease progression

Long-term Results of Comprehensive Clubfoot Release Versus the Ponseti Method: Which Is Better?

Background Clubfoot can be treated nonoperatively, most commonly using a Ponseti approach, or surgically, most often with a comprehensive clubfoot release. Little is known about how these approaches compare with one another at longer term, or how patients treated with these approaches differ in terms of foot function, foot biomechanics, or quality-of-life from individuals who did not have clubfoot as a child. Questions/purposes We compared (1) focused physical and radiographic examinations, (2) gait analysis, and (3) quality-of-life measures at long-term followup between groups of adult patients with clubfoot treated either with the Ponseti method of nonsurgical management or a comprehensive surgical release through a Cincinnati incision, and compared these two groups with a control group without clubfoot. Methods This was a case control study of individuals treated for clubfoot at two separate institutions with different methods of treatment between 1983 to 1987. One hospital used only the Ponseti method and the other mainly used a comprehensive clubfoot release. There were 42 adults (24 treated surgically, 18 treated with Ponseti method) with isolated clubfoot along with 48 healthy control subjects who agreed to participate in a detailed analysis of physical function, foot biomechanics, and quality-of-life metrics. Results Both treatment groups had diminished strength and motion compared with the control subjects on physical examination measures; however, the Ponseti group had significantly greater ankle plantar flexion ROM (p \u3c 0.001), greater ankle plantar flexor (p = 0.031) and evertor (p = 0.012) strength, and a decreased incidence of osteoarthritis in the ankle and foot compared with the surgical group. During gait the surgical group had reduced peak ankle plantar flexion (p = 0.002), and reduced sagittal plane hindfoot (p = 0.009) and forefoot (p = 0.008) ROM during the preswing phase compared with the Ponseti group. The surgical group had the lowest overall ankle power generation during push off compared with the control subjects (p = 0.002). Outcome tools revealed elevated pain levels in the surgical group compared with the Ponseti group (p = 0.008) and lower scores for physical function and quality-of-life for both clubfoot groups compared with age-range matched control subjects (p = 0.01). Conclusions Although individuals in each treatment group experienced pain, weakness, and reduced ROM, they were highly functional into early adulthood. As adults the Ponseti group fared better than the surgically treated group because of advantages including increased ROM observed at the physical examination and during gait, greater strength, and less arthritis. This study supports efforts to correct clubfoot with Ponseti casting and minimizing surgery to the joints, and highlights the need to improve methods that promote ROM and strength which are important for adult function. Level of Evidence Level III, prognostic study

Introduction

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The Peptide–Drug Conjugate Melflufen Modulates the Unfolded Protein Response of Multiple Myeloma and Amyloidogenic Plasma Cells and Induces Cell Death

Immunoglobulin light-chain (AL) amyloidosis is a rare disease caused by clonal plasma cell secretion of misfolded light chains that assemble as toxic amyloid fibrils, depositing in vital organs including the heart and kidneys, causing organ dysfunction. Plasma cell–directed therapeutics are expected to reduce production of toxic light chain by eliminating amyloidogenic cells in bone marrow, thereby diminishing amyloid fibril deposition and providing the potential for organ recovery. Melphalan flufenamide (melflufen) is a first-in-class peptide–drug conjugate that targets aminopeptidases and rapidly releases alkylating agents inside tumor cells. Melflufen is highly lipophilic, permitting rapid uptake by cells, where it is enzymatically hydrolyzed by aminopeptidases, resulting in intracellular accumulation of the alkylating agents, including melphalan. Previous data demonstrating sensitivity of myeloma cells to melflufen suggest that the drug might be useful in AL amyloidosis. We describe the effects of melflufen on amyloidogenic plasma cells in vitro and ex vivo, demonstrating enhanced cytotoxic effects in comparison to melphalan, as well as novel mechanisms of action through the unfolded protein response (UPR) pathway. These findings provide evidence that melflufen-mediated cytotoxicity extends to amyloidogenic plasma cells, and support the rationale for the evaluation of melflufen in patients with AL amyloidosis.Peer reviewe

High Speed Dynamics of Collapsing Cylindrical Dust Fluid

We construct approximate solutions that will describe the last stage of cylindrically symmetric gravitational collapse of dust fluid. Just before the spacetime singularity formation, the speed of the dust fluid might be almost equal to the speed of light by gravitational acceleration. Therefore the analytic solution describing the dynamics of cylindrical null dust might be the crudest approximate solution of the last stage of the gravitational collapse. In this paper, we regard this null dust solution as a background and perform `high-speed approximation' to know the gravitational collapse of ordinary timelike dust fluid; the `deviation of the timelike 4-velocity vector field from null' is treated as a perturbation. In contrast with the null dust approximation, our approximation scheme can describe the generation of gravitational waves in the course of the cylindrically symmetric dust collapse.Comment: 15 page

Blockade of MCAM/CD146 impedes CNS infiltration of T cells over the choroid plexus

Background: Very late antigen 4 (VLA-4;integrin alpha 4 beta 1) is critical for transmigration of T helper (T-H) 1 cells into the central nervous system (CNS) under inflammatory conditions such as multiple sclerosis (MS). We have previously shown that VLA-4 and melanoma cell adhesion molecule (MCAM) are important for trans-endothelial migration of human T(H)17 cells in vitro and here investigate their contribution to pathogenic CNS inflammation. Methods: Antibody blockade of VLA-4 and MCAM is assessed in murine models of CNS inflammation in conjunction with conditional ablation of alpha 4-integrin expression in T cells. Effects of VLA-4 and MCAM blockade on lymphocyte migration are further investigated in the human system via in vitro T cell transmigration assays. Results: Compared to the broad effects of VLA-4 blockade on encephalitogenic T cell migration over endothelial barriers, MCAM blockade impeded encephalitogenic T cell migration in murine models of MS that especially depend on CNS migration across the choroid plexus (CP). In transgenic mice lacking T cell alpha 4-integrin expression (CD4::/tga4(-/-)), MCAM blockade delayed disease onset. Migration of MCAM-expressing T cells through the CP into the CNS was restricted, where laminin 411 (composed of alpha 4, beta 1, gamma 1 chains), the proposed major ligand of MCAM, is detected in the endothelial basement membranes of murine CP tissue. This finding was translated to the human system;blockade of MCAM with a therapeutic antibody reduced in vitro transmigration of MCAM-expressing T cells across a human fibroblast-derived extracellular matrix layer and a brain-derived endothelial monolayer, both expressing laminin alpha 4. Larninin alpha 4 was further detected in situ in CP endothelial-basement membranes in MS patients' brain tissue. Conclusions: Our findings suggest that MCAM-laminin 411 interactions facilitate trans-endothelial migration of MCAM-expressing T cells into the CNS, which seems to be highly relevant to migration via the CP and to potential future clinical applications in neuroinflammatory disorders