Outcomes that matter to patients: Patient Reported Outcome Measures (PROMs) for people with renal replacement UK Renal Registry 2015 Annual Audit Meeting Jo Partington Patient Reported Outcome Measures Insight Account Manager, NHS England

Outcomes that Matter to Patients Jo Partington March 2015 Patient Reported Outcome Measures (PROMs) for people with Renal Replacement

P atient R eported O utcome M easures This slide pack will : Provide an overview of what PROMs are Provide an over-view of the renal replacement PROM project facilitate discussion on your thoughts about this, their content and how these could be used by you. PROMs & Renal Replacement (RR) Slide Pack Objectives Content Background: What are PROMs? Background – renal replacement PROMs project – aims and where are we now? Discussion 3

Background information Patient-reported outcome measures – what are they?

Appleby and Devlin 2010 “The first health system internationally to measure what it produces in terms of health.”

Background: what are PROMs? National data collections Since 2009, all patients undergoing Hip Replacement, Knee Replacement, Varicose Vein and Groin Hernia surgery are asked to participate in PROMs Objective To measure and improve the quality of treatment and care patients receive. Definition Measures of the outcomes of treatment, which are based upon asking patients to report on their own health outcomes. Scope In 2012/13, 127,600 patients gave feedback on their health state before and after surgery. 241,000 episodes 127,600 complete answers Participation 3/4 patients fill out a PROMs questionnaire before surgery. Of these, 3/4 also respond to the post- operative questionnaire. Overall, more than 50% of patients give full feedback on their outcomes. Non responders 6

Patients report their outcomes Patients assess their health based on five dimensions: Mobility; Self-care; Usual activities; Pain or discomfort; Anxiety or depression. Patients rate their health as: (1=no problems, 2=some problems, 3=severe) Patients rate their health on visual analogue scale from 0 to 100. Oxford Hip Score, Oxford Knee Score: 12 hip- or knee specific questions, each rated from 0 (=extreme problems) to 4 (= no problems) Aberdeen Varicose Vein Questionnaire, 13 questions covering Pain and skin irritation; Impact on regular activities; location of the VV; total score between 0 (=best) and 100 (=worst) The questionnairesTiming Finalised data is published approx. 18 months after surgery. EQ-5D Condition- specific questions EQ-VAS 7

Most patients report successful procedures 17 out of 20 patients say their problems were much better following hip replacement 15 out of 20 patients say their problems were much better following knee replacement 1 out of 35 patients say their problems were worse following hip replacement 1 out of 16 patients say their problems were worse following knee replacement 17 out of 20 patients say their problems were much better following varicose vein surgery 14 out of 20 patients say their problems were much better following groin hernia repair 1 out of 40 patients say their problems were worse following varicose vein surgery 1 out of 35 patients say their problems were worse following groin hernia Hip Knee Varicose Vein Groin hernia My problems are much better after surgery. My problems are a little better or much the same. My problems are worse than before. 8

Aims of the collaboration between NHS England and the UK Renal Registry Using PROMs with people requiring Renal Replacement

NHS MANDATE To ensure the NHS becomes better at involving patients, carers and families; empowering them to manage and make decisions about their own care & treatment To enhance quality of life for people with long term conditions (LTCs) Particularly by embracing opportunities created by technology 5YFV Comprehensive transparency of performance data – including the results of treatment and what patients and carers say – to help healthcare professionals see how they are performing, compared to others, and to facilitate improvement; to help patients make informed choices; and to help CCGs and NHS England commission the best quality care. Drivers for a project focussed on outcome Measurement in RR

Establish feasibility of collecting this data from this community – response rates, frequency of administration, mode of collection Reasons for completing Perceived benefits of completion from both patients and clinicians Continuous improvement/adaptation of the process Evaluation of the project critical Equality & Diversity issues – in 2012, just over 20% of patients requiring renal replacement were from BME groups. To reflect this, we hope to translate the condition specific part of the PROM used into 5 other languages – Punjabi, Urdu, Gujarati, Bengali and Arabic Background to the RR PROM Project

In depth work through pilots with CCGs and specialist commissioning to develop a patient centred “whole system” pathway, including measurements, interventions and evidence of improved patient centred outcomes Patient View (PV)2 to facilitate better patient-clinician communication, expand to primary care; support greater access to care records, care planning, self management and shared decision making Offering the opportunity by using a measurement system in Patient View to prevent disease progression for patients’ with earlier stage CKD and an opportunity for care closer to home To electronically gather and utilise measures and outcomes that are important to patients, personalising the presentation of those back into patient care. AIMs of the RR PROM Project

What measurements matter to patients requiring RR? EQ5D - Mobility; Self-care; Usual activities; Pain or discomfort; Anxiety or depression. Rated on a 5 point scale – no problems, some, moderate, severe problems and unable. For example:- Under each heading, please tick the ONE box that best describes your health TODAY MOBILITY I have no problems in walking about  I have slight problems in walking about  I have moderate problems in walking about  I have severe problems in walking about  I am unable to walk about 

Do these measurements matter to patients requiring RR? Palliative Outcome Scale POS-S Renal – an 18 item questionnaire, that concentrates mainly on symptoms, eg. nausea, poor appetite, difficulty sleeping and the degree to which the patient has been impacted by them, in the previous week - not at all, slightly, moderately, severely, overwhelmingly Kidney Disease Quality of Life (KDQoL) instrument has some core questions – SF-12 (similar to EQ-5D) alongside the burden, symptoms/problems, and the effects of kidney disease

THANK YOU FOR LISTENING What do you think? Any further comments/questions?