Title: Using electronic Patient-Reported Outcome Measures (ePROMs) to promote quality of care and safety in the management of patients with End Stage Kidney Disease requiring treatment with Haemodialysis (HD) in research and routine clinical settings: a mixed-methods study.
Funder: Health Education England

Abstract: Background: Patients undergoing haemodialysis (HD) for end-stage kidney disease often report poor quality of life (QoL) and identify improving QoL has a higher priority for them than improvements in survival (1). Patient reported outcome measures (PROMs), including QoL and symptom questionnaires, can be used to assess, from the patients' perspective, the physical, functional and psychological consequences of treatment and degree and impact of symptoms. In research this can provide evidence on treatment effectiveness and provide important patient-centred information to inform treatment decisions by future patients and their clinicians, informing clinical guidelines and health policy. In routine clinical care, use of electronic PROMs (ePROMs) has been shown to reduce A&E visits, hospitalisations, improve QoL and overall survival in cancer patients (2-4). However, PROM use is underdeveloped in HD research and routine care. Across HD settings there remains little consensus on which PROMs should be used or how they should be practically implemented, in terms of when, where and how. This means patients may be completing PROMs which have no direct relevance to their care or face an increasing burden as they complete PROMs for multiple purposes at different time points with little impact on outcomes. Research question: Can the use of ePROMs promote quality of care and safety in the management of patients with End Stage Kidney Disease requiring treatment with HD in research and routine clinical settings. Aim: To optimise and standardise the collection of important patient centred outcomes using ePROMs for patients receiving HD. Objectives: To explore the acceptability and feasibility of ePROM collection in HD settings with patients, carers and clinicians, to identify optimum use to maximise impact. To determine the ideal configuration of PROMs needed to effectively capture outcomes identified as relevant to this patient group by all stakeholders To determine the utility of using established electronic platforms, currently employed to collect data in routine clinical care, to collect ePROMs with UK patients receiving HD. Development of an education package to guide clinicians wishing to use PROMs in HD settings. Methods: Using a mixed methods approach, the research will be conducted through four separate work packages: WP1: Using qualitative methodology to explore the views and experiences of patients, their carer's and clinicians of collecting ePROMs with this patient group. WP2: Using rapid review, determine the measures available to capture the outcomes identified as most relevant to this patient group, using emerging core outcome sets, current validated PROMs and item banks. Gap analysis will identify where important domains lack adequate PROM coverage. WP3: Undertake usability testing with patients to determine if established electronic platforms can collect PROMs identified in WP2. WP4: Development of e-learning module to inform clinicians wishing to use PROMs in HD settings. Timelines for delivery: Four years Dissemination: Conference presentation and publication in peer reviewed journals to health care professionals, and wider audience via patient newsletters and web updates. Potential impact of ePROMs More efficient symptom management, potentially leading to increased survival. Administration efficiency savings Reduction in research waste Assist in benchmarking of clinical services

Lay abstract: Aims: To find the best way to electronically collect and use patient-reported quality of life and symptom data, to improve care and outcomes for patients receiving dialysis for kidney failure. Background: The kidneys are essential body organs which filter blood and remove harmful waste products. Unfortunately, 1 in 7 people in the UK suffer with kidney disease. Many go on to need demanding and costly dialysis treatment which support the damaged kidneys by filtering and cleaning the blood. Dialysis is very intensive, patients receive treatment 3 times a week, with each session lasting 4 hours. It can interfere with a patient's quality of life and lead to increases in symptoms like fatigue and pain and poorer mental health. It is therefore important for clinicians to closely monitor patient's symptoms, quality of life and wellbeing so they can be fully supported. However, traditional measures such as blood tests, do not capture these aspects of health. Meaning that patients can experience problems that go unnoticed until it is too late, potentially leading to hospital admissions and poorer outcomes as a result. One reliable way to capture this information is to ask patients to self-report their health status using validated questionnaires known as patient-reported outcome measures (PROMs). PROMs are being collected electronically (ePROMs) in cancer settings and have been shown to benefit patients by helping: Enhance care planning for individual patients, reducing hospital admissions and increasing quality of life and survival. Assess the quality of care given to a patient group to help with service improvement. Improve research to help decide which treatment is best. Patients better manage their own health.We believe a similar approach could also benefit patients on dialysis, but the use of ePROMs with these patients has not been fully explored. Further research is needed to identify how these measures should be used to improve patient outcomes. Designs and methods: This project involves four stages: 1. Using interviews with patients and carers and clinicians, we will explore their views of using ePROMs, to identify the best ways to use them to improve patient outcomes. 2. Building upon research which has identified which outcomes matter most to patients and staff. We will look at the questionnaires currently used in dialysis settings, to explore if they ask about things that really matter, and if not, what important things are missing. 3. We will test whether the identified questionnaires can be collected electronically, by getting patients to complete them. 4. We will develop an education package to assist clinicians working in dialysis settings who wish to collect PROMs. Patient and public involvement: This work is being undertaken with the support of the local Kidney Patients Association (QEKPA), who identified research on PROMs as a high priority. Patient partners have been involved in the co-design of the study and will continue their involvement in all aspects of the work. A patient member will be invited to join the study management group. Dissemination: Publications in journals and conference presentations will inform health care professionals and researchers of the results. Patient representatives and researchers will write updates on the QEKPA website and national PatientView.org Facebook pages, documenting each step of the study.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: RENAL AND UROGENITAL