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

Abstract

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.