The Role of NGOs in Supporting PROMs / PREMS Dr Shilpa Jesudason - - PowerPoint PPT Presentation

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The Role of NGOs in Supporting PROMs / PREMS Dr Shilpa Jesudason - - PowerPoint PPT Presentation

Aug 01, 2023 193 likes •568 views

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

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1 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

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

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2 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Hazards of being the Last Speaker

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3 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

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4 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
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5 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
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6 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Patients are Experts in their own Lived Experience

  • PROMS and PREMS are central to Consumer

Advocacy Priorities for Consumers:

  • Quality of Life
  • Quality Care
  • Equity and Access to Care
  • Communication and Shared decision-making
  • Patient-centred care
  • Empowerment and Self-Management

KHA and PROMS / PREMS

Community Advocacy Education and Research

Patients Carers Community

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7 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

KHA

ANZDATA Registry Funding Research Project Funding Consumer Engagement in Research Consumer Priority Setting

Role of NGOs in PROMs / PREMs Research

The right PROMS/PREMS At the right TIME By the right PEOPLE For the right PURPOSE With the right RESPONSE

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8 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

2011

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9 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

2014

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10 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

2007 2014

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11 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

2017

KHA Submission to the Organ and Tissue Authority – Survey of Consumer Perspectives on Kidney Transplantation

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12 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Symptom Burden is a Patient Priority

Establishing a core set of outcomes and

  • utcome 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

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13 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

KHA Research

Consumer Voice Structured programs Partnerships Research Funding Advocacy KHA Research Since 1968 - $30 million in research support

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14 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

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15 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

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16 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

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17 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-

aid tools, PROMS and PREMS

  • Financial
  • transport, utilities, home dialysis training support
  • Equity of access to healthcare
  • Home dialysis – decision aids, support for carers
  • Improved access to comprehensive non-dialysis care

Prevent, Detect, Support

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18 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Increased Focus on Kidney Research

Prevent, Detect, Support

  • Mapping current research landscape, investment and outcomes
  • Innovative technology
  • Registries and data systems
  • Evidence translation: Clinical Guidelines
  • Repurposing drugs for use in the treatment of kidney disease
  • Increased focus on multidisciplinary research
  • Industry exchange fellowships
  • Patient and service user engagement in research

PROMS PREMS PROMS PREMS

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19 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

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20 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 ?
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21 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
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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

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0% 10% 20% 30% 40% 50% 60% 70% 80% Yes CKD 1-5 IHD/Sat HD HHD PD KTx CC

Proportion of units surveyed Patient population

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%])

* 9(12%) HD units monitor symptoms

PREMS

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Which questionnaires or measures does your renal unit use?

0% 5% 10% 15% 20% 25% 30% 35% 40% 45% SF-36.v2 KDQOL-36 EQ-5D-5L POS - Renal IPOS – Renal PAM Other PREMs Bespoke measures Modified above Other

Specific measures Proportion of units

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25 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

IPOS-Renal

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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

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27 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Interest in participating in an ANZDATA PROMs Trial?

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Yes No Unsure / unrecorded

Response categories

Proportion of ANZ renal units

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S

ymptom monitoring WI I th Feedback Trial

WIFT

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

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SWIFT – Overview

  • In-centre haemodialysis patients
  • Cluster randomised controlled trial
  • Electronic tablet-based data collection
  • Registry based
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Research question: Does regular symptom monitoring with feedback to clinicians result in effective and cost- effective care for people on haemodialysis?

INTERVENTION

3-monthly IPOS-Renal (Symptoms) Results sent to dialysis nurse unit manager and nephrologist Nephrologist/nurse encouraged to discuss symptoms at next clinical encounter

Patient QOL

SWIFT – Research question & intervention

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Primary outcome: Change in health-related quality of life (measured by the EQ-5D-5L questionnaire)

Baseline QoL + Symptom monitoring Baseline QoL 12 Month QoL

INTERVENTION ARM CONTROL ARM Change in QoL Change in QoL

SWIFT – Schema & Primary outcome

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EQ-5D-5L

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33 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

Consumer Engagement in PROMs /PREMS Research

  • From Concept to Implementation

– Feedback on Scope and Content of PROMS – Methods for data collection – feasibility, acceptability – Ethics and governance Issues around sensitive data

  • What happens after PROMS collection ?

– Management pathways for issues raised – Implementation of best-practice care – Peer Support, Helplines, Community groups,

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34 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

  • Developing expert consumer “champions”

– Trusting relationships with researchers / clinicians – Investment in consumer education and partnership – Respecting patient expertise – Recognition of time, disease burden, costs

  • Clear flow of information to broader consumer base

– “Nothing about us without us”

Consumer Engagement in PROMs /PREMS Research

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35 KIDNEY HEALTH AUSTRALIA 2018 – COMMERCIAL IN CONFIDENCE

KHA

ANZDATA Registry Funding Research Project Funding Consumer Engagement in Research Consumer Priority Setting

Role of NGOs in PROMs / PREMs Research

The right PROMS/PREMS At the right TIME By the right PEOPLE For the right PURPOSE With the right RESPONSE