Patient Reported Experience of Kidney Care in the UK 2022

Abstract

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.