Kidney Patient Report Experience Measure Comments Report 2021 : Is there any other aspect of your experience of kidney care that you would like to comment on? A qualitative analysis of patient free text comments in Kidney PREM 2021

Abstract

The Kidney Patient Reported Experience Measure (PREM) is facilitated annually by the UK Kidney Association and Kidney Care UK. The PREM has 39 questions covering 13 themes. Additionally, the PREM, when accessed online, 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 2021 there were 12,416 PREM responses, 9,850 of which were completed online. 3,877 of responders (39.5%) supplied written comments, 3,179 of which (82%) were coded under a theme covering an aspect of kidney care – the remainder stating that no further comments were necessary. 90% of responders gave consent for their comments to be passed back to their kidney centre. The profile of responders matched that of PREM 2021. There were noticeably more comments from ethnic minorities than in 2020 (24% vs 17%). In this report there has been less emphasis on the well-defined PREM themes and more on emergent themes. Indeed, the largest single emergent theme was the renal unit team, and 68% of comments under this theme were positive. General comments about staff were overwhelmingly positive (80%), thanking them for their care and dedication. This also reflected in role-specific comments though negative comments about staff availability and difficulty accessing appointments were more common. There were also negative comments about staff shortages and inadequate training, and about access to primary care. Overall, 20% of all free text responses to PREM 2021 were positive comments about staff. Patients were generally positive too about their experience of care, though with some negative comments about lack of patient-centredness and staff being rushed and too busy. In contrast to the predominantly positive comments relating to staff and care, there were a number of other themes in which comments had a more negative emphasis. The largest of these related to environment and particularly to comfort, temperature control, and waiting areas and times in the haemodialysis unit. Accessibility and parking arrangements were also criticised. In keeping with this transport arrangements continue to draw many negative comments. Many patients commented on lack of support – particularly with respect to psychological support and the apparent lack of provision for this. There were also issues with communication – predominantly within the kidney team – with the main difficulties being accessing members of the team between appointments, receiving the results of tests in a timely fashion, and messages not being passed between team members. Communication between the kidney team and other teams within and without the institution – notably primary care – also raised concerns. Related to this many patients commented on lack of information, particularly that they had not received adequate updates about their treatment, progress, and transplant prospects, and that they would like more access to advice about diet, fluid intake and exercise. Perhaps not surprisingly the impact of Covid19 drew largely negative comments concerning changes to arrangements, though reactions to changes to appointments processes was mixed. During the course of comments many patients made potentially helpful suggestions some of which might be taken up quickly and inexpensively – such as coat hooks next to weighing scales! Patient characteristics were reflected in comments, for instance younger patients tended to focus on support and older patients on environment and transport. Those on CKD focused on appointments and communication, as did patients with a working transplant who also focussed on COVID-19. Patients receiving peritoneal haemodialysis and patients receiving in-centre haemodialysis (ICHD) focussed on staff and environment with the patients receiving haemodialysis also commenting on transport. Patients receiving haemodialysis at home commented on support and COVID-19. The report also shows the comparison between free text responses from PREM 2020 and PREM 2021. In both years, positive comments about staff received the highest amount of comments.