From today’s reality, to tomorrow’s ‘Vision for Lupus’...From today’s reality, to...
Transcript of 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
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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
Dr Chiara Tani (Chair)
Rheumatologist, University of Pisa, Italy
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?
Dr Chiara Tani (Chair)
Rheumatologist, University of Pisa, Italy
Agenda
Speakers
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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
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Where are the gaps and inconsistencies? What are the calls to action?
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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
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1. Question to the audience
RESULTS WILL APPEAR ON THE SCREEN
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
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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
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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
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2. Question to the audience
RESULTS WILL APPEAR ON THE SCREEN
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
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3. Question to the audience
RESULTS WILL APPEAR ON THE SCREEN
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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/
Healthcare professionals
▪ 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
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Example initiatives
How are the recommendations in the report currently being addressed?
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.
https://www.lupus.org/personal-stories/julian-lennon-and-lucys-legacy
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
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Integrated service delivery:
Gaps and inconsistencies
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:
Calls to action from the Vision for Lupus report
Improve access to specialist and multidisciplinary lupus clinics
Long-term calls to action
Improve access to multidisciplinary
teams, including medical specialists,
nurses, and support services
Encourage more doctors to pursue
rheumatology as a speciality
Short-term calls to action
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
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4. Question to the audience
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
Experiences from specialist lupus centres based in Europe
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
Experiences from specialist lupus centres based in Europe
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
How are the recommendations in the report currently being addressed?
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:
Gaps and inconsistencies
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:
Calls to action from the Vision for Lupus report
Encourage people with lupus to consider participating in clinical research – raise awareness and facilitate access
Long-term calls to action
Involve patients in the design
of clinical trials
Help patients become accountable
for their own care
Explore other non-pharmacologic
clinical trial research
Short-term calls to action
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
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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
5. Question to the audience
RESULTS WILL APPEAR ON THE SCREEN
35
Initiatives making a difference in clinical research
How are the recommendations in the report currently being addressed?
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
Healthcare professionals
▪ 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
36
Example initiatives
How are the recommendations in the report currently being addressed?
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
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