lichen sclerosus survey results - globalskin.orgls from the patient perspective 2 objectives. ls...
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Lichen Sclerosus Survey Results
November 2018
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•As part of its RareDERM community
building initiative, GlobalSkin is working
to:
• Understand the impact of LS on those living
with it and if the patient isa child, the effect
on them and on their families
• Determine whether currently available
treatments are or are not effective in treating
LS from the patient perspective
2
Objectives
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LS Patient Survey
Participant profile at a glance:
• N=1492
• 96% females
• 1:1 US:Non-US ratio
• 14% mild
• 48% moderate
• 37% severe
• 92% are receiving treatment
• 63% are receiving standard-of-care
• 77% report to be adherent to
treatment (‘usually’: 42%, ‘always’
35%)
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Patient Profile
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Patient Profile
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Patient Profile
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Patient Profile
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LS Overall Impact on QoL
95% of patients’ quality of life impacted
93% experience sexual impacts
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Severity: Symptoms & Progression
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Severity: Impact on Life
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Experienced and Physiological Consequences
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Suicide Ideation
1 in 10 women have considered suicide as a consequence of her LS
1 in 5 men have considered suicide as
a consequence of his LS
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Physician Care
46% of
patients are
dissatisfied
with info
provided
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Physician Care
Patients report an average 56 months
until they were diagnosed.
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Disease Management
Only 21% of
patients are
managing their
disease well or
very well
Only half of patients have achieved remission.
For those who have, the average duration is 7 months.
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Treatments Used
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Topical Treatments Used
The most used topical is rated the least effective.
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Over 25%
low or very low
35% not
confident
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Treatment Efficacy
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Patient Parameters
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Patient Parameters
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Other Patient Parameters
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Patient Parameters
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Patient Comments
This disease affects us as women.
What makes us women.
The part of us that is woman. I can't work today..my
private parts hurt.
My husband is a saint
and has been true to
me. I suffer from this
disease, but I think
my husband suffers
more.
LS has
robbed me of
being a fully
functioning
woman, wife
and mother. The individual impact
The Greater Patient
Impact on society (HEoR)
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•LS is an overlooked and under served disease
•There is a significant hidden population fueled by
shame and symptoms that are often not well
managed
•Its effects are frequently permanent
•The disease defines to how patients view
themselves
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Conclusions