from today’s reality, to tomorrow’s ‘vision for lupus’...from today’s reality, to...

From today’s reality,

to tomorrow’s ‘Vision for Lupus’ IFEMA Feria de Madrid

08:15 – 09:45

14 June 2019Job number: NP-GBL-LPU-PPTX-190001

Date of preparation: June 2019

This event has been organised and funded by GSK

Welcome and introductions

Timings

▪ Today’s symposium will run

for an hour and a half

– Welcome and presentation

(65 minutes);

– Interactive panel discussion

(25 minutes)

Housekeeping

14 June 2019 3

Audience interaction

▪ Please submit questions via Slido throughout the

symposium

– To be addressed during the panel discussion

session at the end

▪ Questions will be posed to the audience throughout

this symposium:

– Respond to questions via Slido

Please kindly ensure all mobile

phones are on silent

Feedback

▪ Please complete the evaluation forms on your seats and hand them to a GSK representative

on the way out

Slido overview

14 June 2019 4

Go to slido.com and

enter the event code:

#visionforlupus

Ask questions to be

answered during the

panel discussion

Share your thoughts

and opinion by voting

in live polls

Where are you from?

A. Europe

B. North America

C. South America

D. Asia

E. Australia

F. Africa

514 June 2019

Test question

RESULTS WILL APPEAR ON THE SCREEN

14 June 2019 6

Time Session Speaker

08:15Welcome and Introduction

Overview of A Vision for Lupus initiative and key findings

Dr Susan Mayor (Moderator)

Dr Chiara Tani (Chair)

Rheumatologist, University of Pisa, Italy

08:30Disease Awareness:

What is needed, how and why?

Dr Patricia Cagnoli

Rheumatologist, University of Michigan, US

08:45Integrated Service Delivery:

The reality and what is possible



09:05

Clinical Research:

Preparing for the future togetherProfessor Chris Edwards

Consultant Rheumatologist,

University Hospital Southampton, UK

09:20Interactive panel discussion:

Your opportunity to engage the panel and share your experience

Dr Susan Mayor (Moderator) and the

Faculty Panel

09:40Closing remarks and call to action:

What will you do to drive a change in lupus care?



Agenda

Speakers

14 June 2019 7

Dr. Chiara TaniRheumatologist,

University of Pisa, Italy

Dr. Patricia CagnoliRheumatologist,

University of Michigan, US

Prof. Chris Edwards Rheumatologist,

University of Southampton, UK

Disclaimers: Chris Edwards = Honoraria, advisory boards, speakers bureau, research support from; Abbvie, BMS, Biogen, Celgene, Fresenius, Gilead, GSK, Janssen, Lilly,

Mundipharma, Pfizer, MSD, Novartis, Roche, Samsung, Sanofi, UCB. Patricia Cagnoli = present and past as PI in clinical trials sponsored by BMS, Janssen , Gilead, Lilly, Celgene,

AbbVie, GSK, Genentech. Chiara Tani = consultation fees from GSK Italia

Overview of the initiative and key findings

A Vision for Lupus

Dr Chiara Tani (Chair), Rheumatologist, University of Pisa, Italy

The Vision for Lupus Steering Committee

9

i Consultancy fees received from Eli Lilly, GSK, Human Genome Sciences, Aspreva, Bristol-Myers Squibb, Actelion and Teva. He has also participated in clinical trails sponsored by

these companies; ii Consultancy fees received from GSK Italy; iii Consultancy fees received from GSK and Crescendo; iv GSK has provided financial support to the World Lupus

Federation, Lupus Foundation of America and Lupus Europe; v Consultancy fees received from Amgen, the Global Alliance for Patient Access, Grunenthal, Heart Valve Voice, Lilly,

Pfizer, Roche, Sanofi Genzyme, Sanofi Regeneron.

In March 2018, GSK convened a Global Multidisciplinary Steering Committee of lupus experts to discuss the future

Vision for Lupus

14 June 2019

Dr. Chiara Tani, Rheumatologist,

University of Pisa,

Italyii

Dr. Patricia Cagnoli, Rheumatologist,

University of Michigan,

USiii

Prof. David D’Cruz,Consultant Rheumatologist,

Guy’s and St Thomas’ Hospital,

UKi

Alain Cornet,General Secretary,

Lupus Europeiv

Duane Peters,Senior Communications

Strategist at the Lupus

Foundation of America

Inc. and Staff Coordinator

for the World

Lupus Federationiv

Neil Betteridge,Patient Engagement

Expertv

GSK conceived, developed and led the “A Vision for Lupus” report in collaboration with a Global Steering Committee who received a fee for their services.

Lupus Patient,Anonymous

The Vision for Lupus Steering Committee’s mission was to:

▪ Consider current gaps and inconsistencies in care for people with

lupus

▪ Develop patient-centred calls to action to improve the quality of

care

▪ Outline how implementing these calls to action could make a

difference to people with lupus

10

And, how do we

get there?

The Vision for Lupus mission

14 June 2019

What are the current gaps and

inconsistencies in lupus care?

What do we want lupus care

to look like in the future?

Awareness of lupus • Raise awareness of lupus amongst key audiences including the

general public, people with lupus, their families, carers and primary care doctors

Integrated service delivery

• Improve access to specialist and multidisciplinary lupus clinics to ensure people with lupus are receiving quality care that addresses all aspects of this complex, multisystem disease

Clinical research

• Encourage people with lupus to consider participating in clinical research, raise awareness of ongoing clinical trials and facilitate access to clinical trial research enabling people with lupus to make autonomous decisions in the management of their condition

11

Where are the gaps and inconsistencies? What are the calls to action?

14 June 2019

The Vision for Lupus: gaps and inconsistencies

in care and calls to action

What do you think are the biggest barriers to quality lupus care?

A. Lack of awareness amongst the public and healthcare professionals

B. Misinformation online about how to identify / manage lupus

C. Multidisciplinary aspects of lupus care are not ‘joined-up’

D. Limited access to emotional, psychological and social support

E. Barriers to participation in clinical research

1214 June 2019

1. Question to the audience


Dr Patricia Cagnoli, Rheumatologist, University of Michigan, US

What is needed, how and why?

Disease Awareness

14

General public often unaware

of lupus and its complications1

Patients and families often unsure

what to expect, and online

misinformation may contribute

to misunderstandings4

Healthcare professionals

have short consultation times,

lack of disease recognition and

out-of-date information5

Invisible symptoms and disease

fluctuations may lead to lack

of empathy for patients and affect

mental wellbeing2,3

Poor adherence, treatment

failure and adverse events5

70% initially misdiagnosed6 and

diagnosis delays of up to 3.5 years7,8

14 June 2019

Disease awareness:

Gaps and inconsistencies

1. World Lupus Federation, World Lupus Day International Survey (2018). https://worldlupusdayorg.files.wordpress.com/2019/05/key-survey-findings-2018-05-09-1.pdf 2. World Lupus Federation, Lupus Knows No Boundaries E-Report. (2017) Available at;

https://worldlupusdayorg.files.wordpress.com/2019/05/lupus_knows_no_boundaries_e-report_en.pdf Last accessed June 2019 3. World Lupus Foundation 2019 survey. Available at: https://worldlupusdayorg.files.wordpress.com/2019/05/top-line-global-survey-

data.pdf 4. Neville, C., D. Da Costa, C. Mill, M. Rochon, J. A. Avina-Zubieta, C. A. Pineau, D. Eng and P. R. Fortin. “The needs of persons with lupus and health care providers: a qualitative study aimed toward the development of the Lupus Interactive Navigator.”

Lupus 2014;23(2): 176-182; 5. Comment from Vision for Lupus Steering Committee 6. Kent, T., A. Davidson, D. Newman, G. Buck and D. D’Cruz. “Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey.” Lupus

2017;26(10): 1095-1100; 7. Rees, F., M. Doherty, P. Lanyon, G. Davenport, R. D. Riley, W. Zhang and M. J. Grainge. “Early clinical features in systemic lupus erythematosus: Can they be used to achieve earlier diagnosis? A risk prediction model.” Arthritis Care

Res. 2017;69(6): 833-841; 8. Al Sawah S, Daly RP, Foster S, et al. Understanding Delay in Diagnosis, Access to Care, and Satisfaction with Care in Lupus: Findings from a Cross-Sectional Online Survey in the United States. Presented at the European League

Against Rheumatism (EULAR) 2015 Annual Conference. June 2015. Rome, Italy

https://worldlupusdayorg.files.wordpress.com/2019/05/lupus_knows_no_boundaries_e-report_en.pdf

https://worldlupusdayorg.files.wordpress.com/2019/05/top-line-global-survey-data.pdf

1514 June 2019

Disease awareness:

Calls to action from the Vision for Lupus report

Raise awareness of lupus amongst key audiences

Long-term calls to action

Train patient advocates to provide

accurate information on lupus

Improve education around the

psychological manifestations of lupus

Short-term calls to action

Cultivate a group of public figures

and/or celebrities to talk about

lupus (i.e. Julian Lennon)

Develop a seal of approval for websites

Encourage positive interaction

between people with lupus

Disseminate information

to primary care doctors

As a healthcare professional, how do you like to receive ongoing

professional education and training?

A. Education through journals, i.e. produced by organisations

like the Royal College of GPs in the UK

B. Training courses / events provided at specialist centres

C. Informal small group discussions

D. Symposia events

E. Online education, i.e. IME courses

F. Learning directly from colleagues

1614 June 2019



Which areas of lupus care do you think are most lacking

in terms of patient education?

A. What is a ‘flare’ / a symptom of lupus and what is not

- when it is time to see a doctor?

B. Planning emotional, psychological, social aspects of life

with lupus

C. Importance of nutrition, diet and physical activity

D. Managing lupus in pregnancy

1714 June 2019



1814 June 2019

Initiatives making a difference to disease awareness

How are the recommendations in the report currently being addressed?

1. https://www.rheumatology.org.uk/events-learning/fellowships; 2. https://www.lupus.org/could-it-be-lupus; 3. https://befiercetakecontrol.org/; 4. http://reconnet.ern-net.eu 5.; https://www.lupus.org/improving-clinical-

trials/lfareal-system; 6. https://www.medscape.org/viewarticle/906411 (‘Optimizing Outcomes for Patients With Systematic Lupus Erythematosus: Key Considerations - published 14 February 2019); and

https://www.medscape.org/viewarticle/907952 (‘SLE Case Challenge: How Well Do You Perform?’ - published on 26 March 2019); 7. https://lupus-academy.org/; 8. http://www.talksle.com/; 9. https://www.usinlupus.com/;

10. https://www.lupus.org/advocate/advocate-with-us; 11. https://www.lupus.org/personal-stories/julian-lennon-and-lucys-legacy; 12. https://www.lupus-europe.org/patient-panels/; 13. https://www.lupus-europe.org/pan/


▪ British Society of

Rheumatologists Fellowship1

▪ SLEEURO Training Bursary

Programme

▪ EULAR-endorsed course

for young rheumatologists

▪ Sessions dedicated to

lupus for nurses at Lupus

clinic Pisa

▪ Internal grand-round

sessions with other

specialists at Lupus Clinic

Pisa

Patientsi▪ Lupus UK educational

materials

▪ Lupus Foundation of

America:

▪ ‘Could it be lupus?’

campaign*2

▪ ‘Be Fierce and Take

Control’ website3

▪ ERN- ReCONNET website4

▪ Pregnancy, diet, physical

activity brochures in waiting

room

▪ LFA-REAL system5

Industry

▪ IME Medscape6 and EULAR

Lupus Academy7

▪ TALKSLE8 (industry-

funded)

▪ ‘Us In Lupus’ website 9

▪ Continued partnership with

patient advocacy groups

Advocacy groups

▪ Lupus Foundation of

America:

▪ ‘Advocate with us’10

▪ Julian Lennon and

Lucy’s legacy11

▪ Lupus Europe:

▪ Patient Panels

initiative12

▪ Patient Advisory

Network13

https://www.rheumatology.org.uk/events-learning/fellowships

https://www.lupus.org/could-it-be-lupus

https://befiercetakecontrol.org/

http://reconnet.ern-net.eu/


https://www.lupus.org/improving-clinical-trials/lfareal-system

https://www.medscape.org/viewarticle/906411

https://www.medscape.org/viewarticle/907952

https://lupus-academy.org/

http://www.talksle.com/

https://www.usinlupus.com/;10

https://www.lupus.org/advocate/advocate-with-us

https://www.lupus.org/personal-stories/julian-lennon-and-lucys-legacy

https://www.lupus-europe.org/patient-panels/

https://www.lupus-europe.org/pan/

19

Example initiatives


14 June 2019

How can you leverage

resources available to

help educate your

patients and the

community?

Is there a local

celebrity with

lupus who could help

increase public

awareness?

Could you

lead the development

of a local patient

support group?

• Patient meetings

• EULAR-endorsed

course for

rheumatologists

• Internal sessions

on SLE for

nurses

European Reference

Network for Rare

and Complex

Connective Tissue

and Musculoskeletal

Diseases1,2

Julian Lennon and

Lucy’s legacy3

Lupus Clinic Pisa Lupus Foundation of America

ReCONNET

1. http://reconnet.ern-net.eu/; 2. https://cpms.ern-net.eu/login/ 3.





The reality and what is possible

Integrated Service Delivery

Dr Chiara Tani, Rheumatologist, University of Pisa, Italy

21

People with lupus require

holistic, multidisciplinary care1

– but these structures are

not widespread

Patients may miss out

on some aspects of care

if this is limited

to rheumatologists only2

Patients may struggle

to describe symptoms

or the burden of lupus to HCPs4

– and may not report flares5

Limited access

to multidisciplinary,

specialist teams2

Some areas may be overlooked,

e.g., emotional needs, body-

and self-image3

Few tools allow for improved

patient-physician dialogue2

14 June 2019

Integrated service delivery:


1. Larsen, J. L., E. O. C. Hall, S. Jacobsen and R. Birkelund. “Being in a standstill-of-life: women’s experience of being diagnosed with systemic lupus erythematosus: a hermeneutic-phenomenological study.” Scand J

Caring Sci. 2018;32; 654-66; 2. Comment from Vision for Lupus Steering Committee 3. Hale, E. D., D. C. Radvanski and A. L. Hassett, “The man-in-themoon face: a qualitative study of body image, self-image and

medication use in systemic lupus erythematosus.” Rheumatology 2015; 54(7): 1220-1225; 4. Brennan, K. A. M. and A.-M. Creaven. “Living with invisible illness: social support experiences of individuals with systemic

lupus erythematosus.” Qual Life Res. 2016;25(5): 1227-1235; 5. Kent, T., A. Davidson, D. Newman, G. Buck and D. D’Cruz. “Burden of illness in systemic lupus erythematosus: results from a UK patient and carer

online survey.” Lupus 2017;26(10): 1095-1100

2214 June 2019

Integrated service delivery:


Improve access to specialist and multidisciplinary lupus clinics


Improve access to multidisciplinary

teams, including medical specialists,

nurses, and support services

Encourage more doctors to pursue

rheumatology as a speciality


Co-create interactive tools

to improve communication

Develop evaluation tools

to assess the burden of lupus from

the patient perspective

What do you think is the most important aspect of delivering specialist /

multidisciplinary care?

A. Access to a variety of different specialities working together

B. Physicians and specialist nursing staff working together

C. Optimisation of patient-physician communication

D. Development of patient-friendly lupus evaluation tools

E. Utilisation of patient-reported outcomes (PRO) in care

2314 June 2019


RESULTS TO APPEAR ON THE SCREEN

24

Lupus Clinic in Pisa, Italy

Experiences from specialist lupus centres based in Europe

One of the best-recognised SLE centres in Italy.

Formally established in 2011 to provide multi-disciplinary care to

people with lupus

Specialists working together:

▪ Nephrologist

▪ Obstetrician

▪ Allergologist

▪ Psychiatrist

▪ Neuologist

▪ Pneumologist

▪ Dermatologist

▪ Cardiologist

▪ Endocrinologist

The Lupus Clinic team:Prof. Marta Mosca (Director)

3 consultants rheumatologists

1 researcher, 1 PhD student

2 dedicated lupus nurses

▪ Team of rheumatologists covering

the whole spectrum of rheumatic diseases

(i.e. osteoporosis and fibromyalgia)

▪ Nutritionist, Biologist, Pharmacist

▪ Patients association representative

25

Lupus Clinic in Pisa, Italy


Integrated services:

▪ Ultrasonography for

musculoskeletal diseases

▪ Capillaroscopy

▪ DEXA for bone mineral density

▪ Pregnancy clinic

▪ Clinical trial office

▪ Blood collection centre

▪ Fibromyalgia clinic

▪ Chronic pain clinic

▪ Osteoporosis clinic

Clinics / Services:

• Day service

• Outpatients clinic (2-days/week)

• Day Hospital

• In-patients clinic

• (18 beds)

26

The patient journey at the Lupus Clinic in Pisa

3. In the waiting room: 4. After the visit:

Further contact with the

nurse to agree date for:

• next appointment,

• further assessment

• drug infusions

Or inclusion in waiting

list for in-patient clinic

3. During the visit:

• Doctor-driven clinical

assessment

• Review PROs and

discuss main points

• Discuss treatment,

drug toxicity, results,

proposed changes

• Prescriptions

• First contact with

clinic nurse

• Consent:privacy and

data handling

• Fill in questionnaires

on PROs

• Enrolment in clinical

research studies

2. In the waiting room:

• Perform lab exams

as prescribed during

previous visit

• Fill in patient diary

where applicable

1. Preparing to visit:

27

Lessons from the Lupus Clinic in Pisa, ItalyExperiences from specialist lupus centres based in Europe

Ongoing evaluation of processes to identify areas for improvement Plans for

the future

Reduce waiting times

Optimise consultation

time

Digitise clinical charts

Improve nurse

training

Promote early

referral from non-

specialist clinics

Promote seamless care from

GPs to the Lupus clinic

28

The Louise Coote Unit (Guys’ and St. Thomas’ Hospital, London) is a centre

of excellence dedicated to delivering high quality lupus care:

▪ Founded in 1986 by Prof. Graham Hughes

▪ Named after Louise Coote, who died from SLE

▪ National territory referral unit for patients with APS, SLE, vasculitis

Professor David D’Cruz

Consultant Rheumatologist, Guy’s and St Thomas’ Hospital

Lessons from the Louise Coote Unit, London, UK


29

Lessons from the Michigan Lupus Program, USA

Experiences from specialist lupus centres based in the US

▪ Provides “state of the art” multidisciplinary care

Team of rheumatologists, nephrologists, pulmonologists,

haematologists, dermatologists, and high risk obstetricians

and gynaecologists

▪ Comprehensive patient care environment allows us to make

expeditious appointments with other specialist physicians,

assist in coordinating medical testing

▪ Researchers are heavily involved in basic research and clinical

trials

▪ Program proudly serves as a resource for the training of

physicians and medical students to better serve our community

30


Lupus Clinic Pisa

Specialist and multidisciplinary lupus care initiatives

How can you help to

ensure patients at your

centre receive quality care

for all aspects of their

multi-faceted condition?

What could you do to

support improved

communication between

physicians and patients at

your centre?

Louise Coote Unit

Experiences from

a specialist lupus

clinic in Italy

A day in the life

of the Louise

Coote Unit -

video

Experiences from

a specialist lupus

clinic in the US

Lupus Clinic Pisa Michigan Lupus Program

Preparing for the future together

Clinical research

Professor Chris Edwards, Consultant Rheumatologist,

University Hospital Southampton, UK

3214 June 2019

Clinical research:


This can lead to hurdles and significant delays

in developing potential new therapeutic options

for managing lupus

In particular, conducting clinical

research in lupus requires a large pool

of patients / trials to be run on an

international scale2

There are various barriers to clinical

trial participation, often related to

logistics, misinformation and lack

of encouragement1

1. English R, Lebovitz Y, Griffin R. Transforming clinical research in the United States. Institute of Medicine of the National Academies. Available at: https://www.ncbi.nlm.nih.gov/books/NBK50892/pdf/

Bookshelf_NBK50892.pdf. Last accessed January 2019 2. Comment from Vision for Lupus Steering Committee

3314 June 2019

Clinical research:


Encourage people with lupus to consider participating in clinical research – raise awareness and facilitate access


Involve patients in the design

of clinical trials

Help patients become accountable

for their own care

Explore other non-pharmacologic

clinical trial research


Share information about clinical

research with patients at lupus centres

Educate primary care physicians

about the importance of clinical research

Make it easier for patients to

participate in clinical trials

3414 June 2019

What do you think is the biggest barrier to patient participation in clinical trials

for lupus?

A. Lack of information about available trials

B. Physicians do not refer patients

C. Too much complex information to digest before deciding to participate

D. Fear of randomisation to placebo

E. Patient misconception that being a study patient means being a guinea pig



35

Initiatives making a difference in clinical research


14 June 2019 1. https://wessexhealthlines.nhs.uk; 2. https://www.lupusresearch.org/

Advocacy groups

▪ Lupus Research Alliance

Grant funding for

researchers, clinical trial

posting, patients

information about RCTs2

▪ Clinical trial listings at Lupus

Foundation of America

▪ Outreach to ensure diversity

in clinical trials

▪ Involving patients in trial

development

▪ Improving clinical trial

experience for patients

▪ Providing patient-friendly

materials explaining clinical

trials

▪ Sharing study results in

plain language summaries

▪ Supporting the Lupus

Research Alliance

IndustryClinical trial centres

▪ Seeing study patients outside

of clinic hours

▪ In the UK:

▪ Connective tissue

disease networks

provide regional

trial triage point

▪ Network of NHS-

funded research

facilities


▪ Ideally, physicians recruit

from their own pool of

patients – patients trust their

own doctors

▪ Seeking permission to collect

data and ask about future

trials – from all patients

▪ Support clinicians to find

information about local trials /

projects1

https://wessexhealthlines.nhs.uk/

https://www.lupusresearch.org/

36

Example initiatives


14 June 2019

What can you do to

encourage your

patients to participate

in clinical trials?

How can we ensure

that clinical trials are

relevant to patients

with lupus?

Do all your patients

receive and

understand the results

of research they have

participated in?

NHS England Plain Language Summaries Lupus Research Alliance

GSK committed to providing

study results in plain

language summaries

Grant funding for

researchers, clinical trial

posting, and patient

information about RCTs

NHS England-commissioned

connective tissue disease

networks provide regional

trial triage point

Your opportunity to engage the panel and share your experience

Interactive panel discussion

38

▪ During this session the panel will answer questions related to the

content of this symposium session, posed by the medical facilitator

▪ Questions and comments will also be welcomed from the audience.

Please submit questions to be answered by the panel:

– To submit a question, go to: www.slido.com

– Enter event code #visionforlupus and click 'join' and then

you will be able to submit your question/s

Panel session guidance

http://www.slido.com/

Closing remarks and Call to Action

How will you take what you

have learnt today to make

our ‘Vision for Lupus’ a

reality for your patients?

Download the report & offer your support at:

www.visionforlupus.org

http://www.visionforlupus.org/

from today’s reality, to tomorrow’s ‘vision for lupus’...from today’s reality, to...

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