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

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

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead

Retrospective evaluation of whole exome and genome mutation calls in 746 cancer samples

Funder: NCI U24CA211006Abstract: The Cancer Genome Atlas (TCGA) and International Cancer Genome Consortium (ICGC) curated consensus somatic mutation calls using whole exome sequencing (WES) and whole genome sequencing (WGS), respectively. Here, as part of the ICGC/TCGA Pan-Cancer Analysis of Whole Genomes (PCAWG) Consortium, which aggregated whole genome sequencing data from 2,658 cancers across 38 tumour types, we compare WES and WGS side-by-side from 746 TCGA samples, finding that ~80% of mutations overlap in covered exonic regions. We estimate that low variant allele fraction (VAF < 15%) and clonal heterogeneity contribute up to 68% of private WGS mutations and 71% of private WES mutations. We observe that ~30% of private WGS mutations trace to mutations identified by a single variant caller in WES consensus efforts. WGS captures both ~50% more variation in exonic regions and un-observed mutations in loci with variable GC-content. Together, our analysis highlights technological divergences between two reproducible somatic variant detection efforts

Kidney Patient Reported Experience Measure Comments Report 2022 : A qualitative analysis of patient free text comments in Kidney PREM 2022

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. Additionally, when accessed online, the Kidney PREM has a free text question, “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, during COVID-19 or another time, please tell us below”. In 2022, 11,063 people with kidney disease took part in Kidney PREM, with 7,030 completing the online version which included the free-text question. Of the online responses, 2,376 (33.8%) provided a further comment on their care (21.5% of all participating in 2022), 1,861 of which (78%) were coded under a theme covering an aspect of kidney care – the remainder stating that no further comments were necessary. 92.9% of responders gave consent for their comments to be passed back to their kidney centre. Generally, the profile of responders who left a free text comment matched that of the national Kidney PREM 2022; however, there was noticeably a higher representation in the comments from those who have received a functioning transplant (+5.2%). Compared to Kidney PREM 2021 the profile of responders remained consistent. This report follows the 13 Kidney PREM themes with How the Renal Team Treats You receiving the highest number of comments (1,136), and 64% of comments under this theme were positive. This theme focused on positive comments 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. Environment was the second most common theme to emerge from the comments and was predominantly negative (82.9%). Respondents commented on issues with parking, such as the cost of parking and availability of spaces, the temperature of the unit being too cold and the lack of variety of food which was offered to patients. Scheduling and Planning (330 comments), Access to the Renal Team (325 comments) and Support (278 comments) received comments from individuals wanting more face-to-face contact with the kidney team, better access to the kidney team, particularly consultants and availability of consultant appointments, and more focused support for home life and the impact of treatment. Though, support throughout the COVID-19 pandemic was commented on positively. Aspects of care such as Sharing Decisions, Needling and Privacy and Dignity received fewer comments but should still be considered as important areas of care 3 for improvement. Individuals receiving treatment would like more opportunities to discuss what they would like from their care, needling to be performed slower, so as to be less painful and for conversations with consultants and nurses to be conducted in private. Other Themes contain comments which do not fit the pre-existing Kidney PREM themes. 338 comments fell under the Other Themes and subthemes with prominent topics including mental health, psychological provision, self-care and medication. Additionally, some comments related directly to patient experience of their treatment, and some comments regarding the COVID-19 pandemic. Respondents’ characteristics were also reflected in comments: for instance, younger individuals tended to focus on Support and older individuals and those receiving haemodialysis in-centre or at a satellite unit, on Environment and Transport. Those yet to receive Kidney Replacement Therapy (KRT) or who have received a functioning transplant focused on Scheduling and Planning, Sharing Decisions and Tests. Individuals receiving home therapies were more likely to comment on Other Themes. The report also shows the comparison between free text responses from Kidney PREM 2021 and Kidney PREM 2022. Only 21.5% of respondents completing the measure left a free text response in 2022, compared to 40% in 2021. In both years, the highest number of positive comments referred to staff, while comments on Environment were mostly negative. Comments in 2021 regarding Support included the need for more psychological support and the apparent lack of current provision. This was the same in 2022, although this year included an additional code, support with COVID-19, which received the greatest number of comments within this theme, most of them positive (64%). In both years issues with Communication, particularly individuals wanting better communication, featured as quite a negative aspect of patient care. Additionally, lack of information was an issue, particularly in relation to adequate updates about treatment, progress, and transplant prospects. More access to advice about diet, fluid intake and exercise was also requested

Identifying key priorities for research to protect the consumer with food hypersensitivity:a UK Food Standards Agency Priority Setting Exercise

Introduction: Food hypersensitivity (FHS), including food allergy, coeliac disease and food intolerance, is a major public health issue. The Food Standards Agency (FSA), an independent UK Government department working to protect public health and consumers’ wider interests in food, sought to identify research priorities in the area of FHS. Methods: A priority setting exercise was undertaken, using a methodology adapted from the James Lind Alliance—the first such exercise with respect to food hypersensitivity. A UK-wide public consultation was held to identify unanswered research questions. After excluding diagnostics, desensitization treatment and other questions which were out of scope for FSA or where FSA was already commissioning research, 15 indicative questions were identified and prioritized by a range of stakeholders, representing food businesses, patient groups, health care and academia, local authorities and the FSA. Results: 295 responses were received during the public consultation, which were categorized into 70 sub-questions and used to define 15 key evidence uncertainties (‘indicative questions’) for prioritization. Using the JLA prioritization framework, this resulted in 10 priority uncertainties in evidence, from which 16 research questions were developed. These could be summarized under the following 5 themes: communication of allergens both within the food supply chain and then to the end consumer (ensuring trust in allergen communication); the impact of socio-economic factors on consumers with FHS; drivers of severe reactions; mechanism(s) underlying loss of tolerance in FHS; and the risks posed by novel allergens/processing. Discussion: In this first research prioritization exercise for food allergy and FHS, key priorities identified to protect the food-allergic public were strategies to help allergic consumers to make confident food choices, prevention of FHS and increasing understanding of socio-economic impacts. Diagnosis and treatment of FHS was not considered in this prioritization