The Role of NGOs in Supporting PROMs / PREMS Dr Shilpa Jesudason National Clinical Director, Kidney Health Australia Nephrologist, Royal Adelaide Hospital Chair, CNARTS Clinical Research Group 1 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Hazards of being the Last Speaker 2 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Kidney Health Australia To promote good kidney health through education, advocacy, research and support Non-Government Peak Consumer Organisation Profit – for – Service Model 100 % Charitable Funding 3 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Consumers and KHA • National Consumer Council • State-based KHA Community Groups • Community Awareness Activities – Kidney Week – Big Red Kidney Walks – Kidney Kar Rally • Annual Kidney Kids Camp • Big Red Kidney Buses – Holiday Dialysis • Transplant Housing • Consumer Engagement in Research 4 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Support and Education • Website: www.kidney.org.au • Helpline: 1800 454 363 • Educational Resources • Patient Support App • > 45,000 resources distributed to Consumers / year • Primary Care Education program – > 44, 000 Health professionals • KHA-CARI Evidence-based Guidelines 5 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
KHA and PROMS / PREMS Patients are Experts in their own Lived Experience • PROMS and PREMS are central to Consumer Community Advocacy Advocacy Patients Priorities for Consumers: Carers • Quality of Life Community • Quality Care • Equity and Access to Care • Communication and Shared decision-making Education • Patient-centred care and • Empowerment and Self-Management Research 6 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Role of NGOs in PROMs / ANZDATA PREMs Research Registry Funding The right PROMS/PREMS At the right TIME Research Consumer KHA By the right PEOPLE Project Priority Funding Setting For the right PURPOSE With the right RESPONSE Consumer Engagement in Research 7 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
2011 8 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
2014 9 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
2007 2014 10 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
2017 KHA Submission to the Organ and Tissue Authority – Survey of Consumer Perspectives on Kidney Transplantation 11 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Symptom Burden is a Patient Priority Establishing a core set of outcomes and outcome measures for trials / research: • Transplant • Peritoneal Dialysis • Haemodialysis • Kids • Polycystic Kidney Disease Based on the shared priorities of patients, caregivers, clinicians, researchers, policy makers, and relevant stakeholders 12 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
KHA Research Since 1968 - $30 million in research support Consumer Voice Structured Advocacy programs KHA Research Research Partnerships Funding 13 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
KHA and Consumer Research Priorities • 2014: National Workshop on Priority Setting for CKD Research • 2016-17 : KHA Consumer Surveys on Research • 2018: KHA Research Grants $250,000 • Stream 1: Improving quality of life and duration of life for those living with CKD • Stream 2: Making kidney transplants last longer • Stream 3: Preventing the progression of chronic kidney disease Prevent, Detect, Support 14 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
KHA and Commonwealth Programs • KHA Youth Program – peer support for young people • KHA Indigenous Consultations – underpin CKD Guidelines • Kidney Health Australia commissioned to develop the National Strategic Action Plan for Kidney Disease (NSAP-KD) Prevent, Detect, Support 15 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Key Priorities for Action Plan • Prevention and early detection • Improving the lives of people living with kidney disease • Increasing organ donation and transplantation • Supporting high risk/needs communities • Increased focus on kidney research Prevent, Detect, Support 16 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Improving the lives of people living with kidney disease • Patient self-support and empowerment Peer support and patient networks, education, improved health literacy, decision- o aid tools, PROMS and PREMS • Financial transport, utilities, home dialysis training support o • Equity of access to healthcare • Home dialysis – decision aids, support for carers • Improved access to comprehensive non-dialysis care Prevent, Detect, Support 17 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Increased Focus on Kidney Research • Mapping current research landscape, investment and outcomes • Innovative technology PROMS • Registries and data systems PREMS • Evidence translation: Clinical Guidelines • Repurposing drugs for use in the treatment of kidney disease • Increased focus on multidisciplinary research • Industry exchange fellowships PROMS • Patient and service user engagement in research PREMS Prevent, Detect, Support 18 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
PROMS and PREMS in the RENAL SPACE • Renal patients are well- defined and “captured” cohort – • > 25,000 with ESKD on dialysis or with a transplant, PLUS non-dialysis • Significant Symptom Burden – often under-recognised • High Mortality but also poor QoL • Frequent / repeated engagement with health services • Growing interest in recent years – KHA closely linked in – State-based Renal Networks and government – Research Groups – Consumer groups 19 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
PROMS and PREMS in the RENAL SPACE What we don’t know: • Which PROMS / PREMs ? • How Best to Collect and Report ? • How to link back to Care and Services ? • How to facilitate benchmarking / KPIs ? • How to (whether to) link to funding ? • How to assess value ? 20 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
PROMs collection in Renal Registries • UK, France, Canada • ??Australia Potential uses - to be validated • Informing clinical care – locally, nationally • Promoting patient engagement in treatment – feedback loops • Benchmarking • Audit and quality assurance 21 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
ANZDATA Registry All dialysis and transplant recipients – annual survey 100% engagement of renal units Funded in part by KHA PROMS Working Group – A/Prof Rachael Morton (Chair) Includes KHA Survey of Renal Units undertaken 2017/18
Does your renal unit collect any PROMs or PREMs for specific groups with kidney disease as a part of routine clinical practice? (55 of 79 units [70%]) 80% * 9(12%) HD 70% units monitor symptoms 60% Proportion of units surveyed 50% 40% 30% PREMS 20% 10% 0% Yes CKD 1-5 IHD/Sat HD HHD PD KTx CC Patient population
Which questionnaires or measures does your renal unit use? 45% 40% 35% 30% Proportion of units 25% 20% 15% 10% 5% 0% SF-36.v2 KDQOL-36 EQ-5D-5L POS - Renal IPOS – Renal PAM Other PREMs Bespoke Modified above Other measures Specific measures
IPOS-Renal 25 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
Renal Unit PROMS Survey Mainly collected on PAPER Collected for various reasons Collected at various times / frequencies Collected by patients, carer and nurses Low time / resourcing hampered collection
Interest in participating in an ANZDATA PROMs Trial? 90% Proportion of ANZ renal units 80% 70% 60% 50% 40% 30% 20% 10% 0% Yes No Unsure / unrecorded Response categories 27 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE
W I FT S ymptom monitoring WI I th Feedback Trial PI: A/Prof Rachael Morton, plus a broadly representative investigator team Seed funding from Kidney Health Australia 2018 Research Stream 1 - Improving quality of life and duration of life for those living with CKD
SWIFT – Overview • In-centre haemodialysis patients • Cluster randomised controlled trial • Electronic tablet-based data collection • Registry based
SWIFT – Research question & intervention Research question: Does regular symptom monitoring with feedback to clinicians result in effective and cost- effective care for people on haemodialysis? INTERVENTION Results sent to dialysis Nephrologist/nurse encouraged Patient 3-monthly IPOS-Renal nurse unit manager to discuss symptoms at next (Symptoms) QOL and nephrologist clinical encounter
SWIFT – Schema & Primary outcome INTERVENTION ARM CONTROL ARM Baseline QoL Baseline QoL + Symptom monitoring Change in QoL Change in QoL 12 Month QoL Primary outcome: Change in health-related quality of life (measured by the EQ-5D-5L questionnaire)
EQ-5D-5L
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