Patient Reported Experience of Kidney Care in the UK 2020

Headline findings in 2020 • Encouragingly, despite the global pandemic, patients continue to rate their Overall Experience of the service provided by their renal centre highly. • Patient reported experience of Support and Sharing Decisions About Your Care fell in 2020. • Patient scores for Support fell amongst Chronic Kidney Disease (CKD), peritoneal dialysis, home haemodialysis and transplant patients compared to 2019. • Patient experience of Sharing Decisions About Your Care was lowest in those receiving in-centre or in-satellite haemodialysis. • Patient reported experience of Transport improved for in-centre and in-satellite haemodialysis patients in 2020. • The experience of patients living with CKD but not receiving renal replacement therapy notably decreased in 2020 compared to 2019, particularly for Overall Experience, Support and How the Team Treats You

Patient Reported Experience of Kidney Care in the UK 2022

Executive Summary This is the seventh annual report of the national Kidney PREM which is a measure of kidney patients’ self-reported experience of the care they receive from kidney centres. It provides people living with kidney disease with the opportunity to feed into serviceimprovement by sharing what matters most to them. Data collection for this report took place for six weeks between 1st October and 11th November 2022. A total of 11,063 valid responses (7,030 online, 4,033 paper) were received, slightly fewer than in previous years. It is noteworthy that 15,210 paper surveys were sent to centres with only 26.5% being returned. Missing data were more common in paper returns. These issues have considerable resource implications. Older people and those receiving haemodialysis were more likely to use paper though the majority in both groups responded online. The proportion of responders aged over 75 (25.1%) was higher than previous years and this group was over-represented in the sample compared to the proportion in this age category in the UK Renal Registry returns for those receiving kidney replacement therapy (KRT). Individuals of Asian ethnic background remain under-represented on the same basis. Transplant recipients were again markedly under-represented (16.8% of returns) whilst those receiving centre and satellite-based haemodialysis (61.1%) were over-represented. The proportion with chronic kidney disease (not receiving KRT) has remained stable at 15.2%. 145 (9%) of these stated that they had chosen conservative management – more than double that in 2021. Overall, a high proportion of participants (27%) said they needed help to complete the survey – especially those over 75, those of Asian ethnic background, and those receiving dialysis. There has been a small increase in the proportion of haemodialysis recipients participating in shared care – though a significant proportion still reported not being asked to participate, especially older respondents (42.2% of those over 75) and those dialysed in-centre rather than in satellites (41.5%). For the first time, participants were asked whether English was their primary spoken language. 1,235 (12.8%) said they had a language other than English. Almost 100 languages were reported, Asian languages being the most prominent. In another first, individuals were given the option to provide the first part of their postcode. 7,998 analysable values (72.3% of all responses) were returned. These data may allow assessment of participant deprivation. Respondents were asked ‘Overall, how much better or worse was your kidney care experience during the last year?’. Though scores for the majority have remained stable, experience seems to have improved slightly amongst those not receiving KRT, whilst for those receiving centreand satellite-based haemodialysis experience seems to have deteriorated. This may reflect a reversal of service changes enforced by the pandemic. In 2020 non-KRT and, to a lesser extent, transplanted individuals experienced reduced outpatient provision and reduced access to specialist nursing, whilst those receiving centre- and satellite-based haemodialysis experienced some benefits, notably changes in transport arrangement. The trends described may reflect a ‘levelling-out’ effect. There was little change from previous years across the 13 Kidney PREM themes. Access to the Renal Team, Privacy & Dignity and Patient Information remain the highest scoring themes and Sharing Decisions About Your Care and Transport continue to be scored poorly. The gains made in the Transport theme in 2020 have dwindled. Scores for Support, Communication and Needling remain just above the lowest two themes, although Support and Needling continue their slight year on year improvement. These low scoring themes also tended to have the widest ranges of centre mean values. There were major differences in some theme scores by treatment modality. Notably scores for Fluid Intake and Diet were markedly low in those not receiving KRT and Sharing Decisions and Privacy & Dignity amongst in centre-based and satellite haemodialysis recipients. Low scores in Communication were largely driven by scores on questions related to communication with GPs and non-healthcare services; in Transport by not being able to leave the haemodialysis unit within 30 minutes of being ready to leave; and in Environment by parking. Scores on How the Renal Team Treats You were generally good though perhaps reduced by low scores on the question of being asked about emotional feelings. Those centres with the lowest theme scores tended to be those with fewest responses. Though there are a number of areas highlighted above in which there is potential for improvement, it is encouraging that the Overall experience question continues to be scored well with only minor differences across modalities

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

Motor Competence between Children with and without Additional Learning Needs: A Cross-Sectional Population-Level Study

The aim of this study was to examine associations in motor competence between children with additional learning needs (ALN) and typically developing children. This cross-sectional study involved a nationally representative cohort of 4555 children (48.98% boys; 11.35 ± 0.65 years) from sixty-five schools across Wales (UK). Demographic data were collected from schools, and children were assessed using the Dragon Challenge assessment of motor competence, which consists of nine tasks completed in a timed circuit. A multi-nominal multi-level model with random intercept was fitted to explore the proficiency between children with ALN and those without. In all nine motor competence tasks, typically developing children demonstrated higher levels of proficiency than their peers with ALN, with these associations evident after accounting for age, sex, ethnicity, and socioeconomic status. This study highlights motor competence inequalities at a population level and emphasises the need for policymakers, practitioners, and researchers to prioritise motor competence development, particularly for children with ALN

Improving patient experience of kidney care, one comment at a time: A mixed methods analysis of Kidney PREM 2020 patient comments

Peer reviewedFinal Published versio

Patient Reported Experience of Kidney Care in the UK 2021

Headline findings • 12,416 people with kidney disease, from all 68 treating centres in the UK, took part in Kidney PREM this year, largely online. • Overall experience of kidney care continues to be rated highly, with many patients who provided a written comment thanking staff for their commitment and efforts. • For four in five participants, overall experience of kidney care stayed the same or was better during the last year of COVID-19. People with a transplant and those with CKD are more likely than those receiving dialysis to report a worse experience of kidney care over the last year. • Privacy and Dignity, Patient Information and Access to the Renal Team continue to be high scoring and are the most consistent regardless of treatment. • Experience of Communication between members of the renal unit team and people with kidney disease was scored far higher than communication between members of the renal team and GPs. • Patient reported experience of Sharing Decisions About Your Care is particularly low scoring, with greater variability in experience between centres and across treatment types. More than half of those on haemodialysis have not been invited to take part in tasks of haemodialysis care, or do not know if they have. • Broadly half of those receiving in-centre or in-satellite haemodialysis say that staff always Needle their fistula or graft with as little pain as possible; this remains a low scoring area with considerable range between centres. • People receiving peritoneal dialysis and home haemodialysis report improved experience of Support from the renal unit team with treatment this year, compared to those receiving in-centre haemodialysis. Support in general continues to be a low scoring theme, notably lower than in 2019. • Experience of Advice on Fluid Intake scores higher than Advice on Diet, and both are rated higher by those receiving dialysis than people with CKD or in receipt of a transplant. • People receiving peritoneal dialysis report improved experience of Tests, with results being returned more quickly; this has worsened for those with a transplant and remains relatively low for people receiving in-centre haemodialysis. Half of respondents do not always understand their test results. • Patient reported experience of Transport continues to be scored better compared to scores in 2019. As in previous years, Transport is one of the lowest scoring aspects of kidney care experience. • People with CKD report relatively poorer experiences than people on kidney replacement therapy; the median (middle) score awarded for overall experience decreased to 6.0 from 7.0 in 2020 and remains there this year

From Launch to Business Insight:Developing a framework to assess the environmental cost of satellite data with consideration of technical, economic and governance aspects.

With the rapid growth of the space industry in the UK and the prospect of many future launches, the environmental consequences may be significant in the near future. To assist with this, a set of categories to define an ESG (Environmental, Social and Governance) type assessment system for space missions is ultimately proposed. Research into categories for a framework was undertakenwith gaps in the literature identified, alongside discussions with industry partners in sustainability consulting and academic experts on Life Cycle Assessment (LCA) and policy. LCA, in theory, is appropriate for scoring design, manufacture and launch phases of the space mission lifecycle, but further work on space specific methods is needed. Examples have been found of carbon scoringfor launch vehicles and spaceports which could feed into the framework but these are limited in number and scope. Methods have been identified for launch modelling using radiative forcing and propulsion modelling. Procedures currently exist for sustainability scoring of in orbit operations and regarding debris mitigation such as the Space Sustainability Rating (SSR) therefore, whilst it isacknowledged, this area is not the focus of this report. Other areas of literature review include the circular economy of the space industry. Sources outline the theoretical benefit of this and methods have been proposed on calculating the value of the resources currently in orbit. Earth monitoring contributions to sustainable development goals are also explored. Future recommendations include development of extensive space industry specific LCA databases. Further work in the roadmap ought to contain a more detailed approach, with future projects focusing on and finalising scoring metrics for each category. Space sector entities with goals of developing ESG credentials should be identified as future partners to ultimately expand the investigations and reporting rigour of UK Space Sector entities