Introduction:
Quality improvement enhances not only patient outcomes, but also patient satisfaction, involving patients in this process is essential. Empowered patients are fundamental when delivering a home dialysis service. Currently, there is no easy way to assess the quality of the service you are delivering and measure the patient experience relating to this. There are UK national patient reported experience measures (PREMS) within kidney disease more generally, however these do not give granular detail on peritoneal dialysis. We therefore developed a patient reported experience measure of peritoneal dialysis in the form of a hand held score card which can be used to identify individual education gaps and patterns of service issues.
Methods:
We worked collaboratively with patients and PD nurses to develop a patient held scorecard. Patient partnership through focus groups enabled co-production in the design of the instrument. We sampled a variety of visual analogue scales and themes within the focus group to enhance usability for patient partners. Demographics collected included age, gender and whether the patient dialyses independently or assisted. The score card was distributed via postal service to our PD cohort.
Results:
Through patient focus groups we identified that a numerical colour-based scale for scoring the domains of the scorecard (figure 1) was the most favourable due to its simplicity. Key themes were identified by thorough detailed patient and nurse specialist discussion to cover the issues that were most pertinent. The most common themes encountered were patient confidence, the ability to recognise infection, along with pain and the need for a good quality of life. Other themes recognised were based on exit site care and placement. Colour indicators on the scorecard for each domain are interpreted as: green; domain met, no action, amber; improvements could be made, and red; urgent education and training needed. We ran an initial pilot, including only 13 patients. The patients found the card easy to use, clear and liked the option of having free text to add comments. Simplicity of the scorecard is key and is one of its main strengths, it also allows us to evaluate patient’s perception of their knowledge and individualise care and training on areas of concern.
Our second run aimed to analyse the ease of usability of the scorecard and included 22 patients. 95% found it easy to complete and felt it to be a useful tool for new starters to PD. The majority (74%) completed it in <5 minutes.
Once we had established that our scorecard was effective, we distributed this to our local PD population (n=65), with a return rate of 44% (n=29). We were able to highlight that within our service, the ‘green’ domain was the majority in all areas. However, we were able to identify that 31% of the respondents felt that they did not have enough knowledge about PD prior to starting dialysis, and more concerning, 10% of patients (n=3) felt they were unable to recognise the signs or symptoms of peritonitis. See table 1.
Conclusions:
A patient held scorecard has the potential to contribute to quality improvement, not only the care of PD patients, but also patient safety and catheter outcomes.The data derived could potentially feed into a variety of existing improvement programmes such as the Renal Registry, to develop a standardised way of collecting patient centred PD outcome data.By use of the coloured analogue scale there is an opportunity for a dashboard to be developed to allow units to compare quality and patient reported outcome measures. Our initial pilot data was presented at UKKW 2021.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.