Online conversation tracking Intermediary results: Specific … · 2016. 1. 20. · Background &...
Transcript of Online conversation tracking Intermediary results: Specific … · 2016. 1. 20. · Background &...
05/02/2010
By Carl Vandeloo, Senior Research Consultant, InSites Consulting
Steven Van Belleghem, Managing Partner, InSites Consulting
Annelies Verhaeghe, ForwaR&D lab, InSites Consulting
For: Keppra brand team
Online conversation tracking
Intermediary results: Specific questions
Epilepsy
Background & Objectives
Background
• On social media, there are an increasing amount of conversations about health
and diseases.
• During the last two years, UCB and InSites Consulting have invested quite a lot in
the tracking of online observations. InSites Consulting & UCB have set-up first
projects for Neupro, Cimzia & Keppra.
• In 2010 (& later) UCB wants to set-up conversation trackings for its key products
(starting with Neupro, Cimzia, Vimpat and others may follow).
Objectives conversation tracking
1. Increase the effectiveness of the brand plans
2. Get insights directly from patients during spontanuous discussions they have
online
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Methodology
Conversation tracking is different from other methodologies on a number of
aspects:
During the project, we strongly encourage feedback from the brand and insight
teams
• The more background we have about challenges and issues in the marketing plans, the
better we can tailor the analysis.
• A market insights needs to be recognizable and relevant for your industry and company.
Therefore we ask help from the brand team in determining topics for in-depth analysis.
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Traditional research Social media netnography
Asking/ interviewing Listening: consumers put topics on the agenda
Online behaviour (clickrates, keyword analysis)
User-generated-content
Profile: Country, sample size, profile Limited information on profile
Independent People influence other people
Post-hoc Heat of the moment
Strict distinction between quantitative and qualitative analysis
Fusion of analysis techniques. Analysis is done with text analytics
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PROFILING
Country of originth
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UK:18%
61%
4%
7%
The majority of the online conversations comes from US
N = 854
Other countries: 3%
Indicated in grey
Q: From which countries are the online conversations?
Note: only conversations where country information is available
Caregivers vs patientsth
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N = 4684
About ¾ of the conversations comes from patients
Q: Who has posted the online conversations?
Note: only conversations where information on profile is available
73%
27%
Patients Caregivers
BOTTOM-UP SEGMENTATION
EPILEPSY
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42.469 online conversations
about EpilepsyTime scope June to December 2009
Methodology
• Through pattern detection and deliberate key
word searching different clusters of words in the
buzz are found that refer to different themes
• For each theme, we determine the size of the
cluster and the sentiment of the cluster
Interpretation
• Different quadrants are determined based on
quartiles in volume and sentimeter (Q1 – Q2 and
Q3 – Q4).
• Meaning of different quadrants
• 1: Act: themes in the market that are often
mentioned with a negative sentiment
• 2: Develop: themes in the market that are often
mentioned with a positive sentiment
• 3: Threats: themes with negative sentiment that
are currently not often mentioned but that are
explicitely negative for certain market niches
• 4: Potential: themes with mixed sentiment that are
often mentioned. In the future, we can try to
influence the sentiment of those themes positively
VolumeS
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Bottom-up segmentation
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Main themes in online conversations about
Epilepsy11
Volume
Sen
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Biggest themes are related to the different types of epilepsy or the person who suffers from epilepsy. Medication and brand names are also frequently discussed online.
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N = 42469
family
seizures
stakeholders
symptoms
medication brands
medication
epilepsy
diagnosis
types epilepsy
social impactchildren
administration
medication
Success
treatment
(no) control
surgery
side effects
budget
diet
generic medication
Frequency and
duration seizures
Seizure triggers
Medication
unloyalty
Treatment
Specific triggers
knowledgeMolecules
Polytherapy
Alternative
treatment
Other treatments
Bottom-up segmentation
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What are the types of epilepsy
discussed online?
DIFFERENT TYPES OF EPILEPSY
Buzz and sentiment on epilepsy types
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Volume
Sen
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Petit mal
(absence)
Myoclonic
Tonic
Complex
partialClonic
Nocturnal Temporal Lobe
Simple
partial
AtonicTonic Clonic
Less severe types of Epilepsy (e.g. Petit mals) are discussed with a more positive sentiment. Tonic Clonic seizures can be considered most negative. A very high buzz with a very low sentiment.
SYMPTOMSEPILEPSY
Share symptoms in total amount of conversationsth
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One fifth of conversatios is about symptoms of epilepsy.
Q: To what extent do people mention symptoms in the online conversations?
Total sample - N=42469
Symptoms
20%
N = 8367
Total sample
100%
N = 42469
Prevalence of different symptomsth
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Q: What symptoms are most often mentioned in online conversations?
Most discussions on Epilepsy are about sleep issues and stress. Headaches is the most common pain
type observed.
21%
15%
9%
9%
7%
7%
6%
6%
6%
6%
5%
4%
4%
4%
3%
3%
3%
1%
sleep issues and fatigue
stress and anxiety
emotional and mood
dizziness
pain
other psychological
other
headache
memory issues
symptoms
cardiovascular
confusion
weight issues
muscles
vision
respiratory
gastro
tumor
N = 8367 (conversations on symptoms)Items in grey will be discussed in detail on next slides
Sleep issues and fatigue?th
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21%
18%
8%
7%
3%
3%
2%
2%
medication
tired
insomnia
sleepy
lack of sleep as seizure trigger
nocturnal seizures
sleep deprivation (often
as preparation for EEG)
hours of sleep
Sleep issues are often linked to side
effects of anti epileptic drugs.
Epilepsy is more associated with sedation
than with insomnia
A lack of sleep can be a seizure trigger.
That‟s why sleep deprivation is often
required before conducting a EEG, as a help
for the diagnosis.
Sleep issues and fatigue are most
frequently discussed in combination with
respiratory problems, stress and muscle
problems.
People with Nocturnal, Myoclonic and Tonic
seizures experience more sleep issues than
other epileptic patients.
Memory issues?th
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Memory issues linked with epilepsy are
most often about the short term
memory. Discussions about the long
term memory are rare.
After a surgery, some people
experience memory issues too.
A (slightly) higher association with
memory problems for generalized clonic
epilepsy and temporal lobe epilepsy.
25%
10%
7%
1%
medication
short term memory
surgery
long-term
Pain? th
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Back pain: 3%
Stomach: 2%
Tongue: 2%
Shoulder: 1%
Muscles: 1%
Leg: 1%
Hands: 1%
Eye: 1%
Bone tissue: 1%
Ankle: 1%
Apart from
headaches, there
is no outspoken
association
between
epilepsy and
pain on specific
body parts
Generalized clonic
patients discuss
pain (slightly)
more.
N = 573 (conversations on pain)
BRANDSCAPE
EPILEPSY
Share brands in total amount of conversationsth
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Brands for epilepsy treatment are mentioned in about 14% of online conversations.
Q: To what extent do people mention brands in the online conversations about pharmaceutical treatment?
Total sample - N=42469
Brands
14%
N = 5836
30%
N = 12754
Pharmaceutical treatment
Total sample
100%
N = 42469
2% (832 conversations)
are about generic
products
Bottom-up segmentation
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When does a AED work for
patients?
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Medication works in the eyes of patients when it gives seizure control, or when it reduces the number of seizures and does not have too much side effects.
As such: working medication consists of an imaginary ratio:
Q: What is a working medicine for patients?
Effectiveness =
Seizure control
Number and gravity side effects
I have been taking Lamictal for two years and the
side effects are dizziness, anxiety and weight gain
but it works
Reasons to switch drugs
I have been a guinea-pig testing different drugs
none of which helped.
Q: What are reasons to switch drugs?
The drug does not
help in epilepsy
control
Too strong side
effects
AND/OR
He has had so many side effects from everything
i'm curious because I'm also hoping to find
something that works for me.
Bottom-up segmentation
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What is buzz and sentiment
for different anti epileptic
drugs?
Methodology
• Through pattern detection and deliberate key
word searching different clusters of words in the
buzz are found that refer to different brands
• For each brand, we determine the size of the
cluster and the sentiment of the cluster
Interpretation
• Different quadrants are determined based on
quartiles in volume and sentimeter (Q1 – Q2 and
Q3 – Q4).
• Meaning of different quadrants
• 1: Act: brands in the market that are often
mentioned with a negative sentiment
• 2: Winners: brands in the market that are often
mentioned with a positive sentiment
• 3: Low potential: brands with negative sentiment
that are currently not often mentioned but that are
explicitely negative for certain market niches
• 4: Potential: brands with mixed sentiment that are
often mentioned
VolumeS
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Brand, sentiment and volume of AEDs
explanation26
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Brand, sentiment and volume of AEDs
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Volume
Sen
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N = 5836
Keppra
Lamictal
Topamax
Depakote
Trileptal
Vimpat
Dilantin
Lamotrigine
Zonegran
Epilim
Diastat
LyricaKlonopin
Valium
Zarontin
ZoloftFelbatol
Mysoline
Diamox
Epanutin
Tranxene
Discussions about Vimpat are very positive. Keppra is discussed most online.
Share of voiceBrands for treatment of Epilepsy
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Keppra and Lamictal are by far the brands with the biggest amount of conversations followed by Topamax, Depakote and Trileptal. The number of conversations on Vimpat is also increasing compared to last year.
Q: What is the share of voice for the different treatments for epilepsy?
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
35%30%
11%9%9%
7%6%
5%4%4%
3%2%2%1%1%1%1%0%0%0%0%0%
KeppraLamictalTopamaxDepakote
TrileptalVimpat
DilantinLamotrigine
Zonegranepilim
DiastatLyrica
KlonopinValium
ZarontinZoloft
FelbatolMysoline
DiamoxEpanutinTranxene
Pregabalin
Epilepsy brands – N = 5836
= component, discussed as brand
Share of voiceEvolution of number of conversations about the top brands
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The number of conversations about Keppra and Vimpat decreased over the last half year
Q: What is the share of voice for the different treatments for epilepsy?
0,00%
1,00%
2,00%
3,00%
4,00%
5,00%
6,00%
7,00%
8,00%
9,00%
10,00%
June July August September October November
Keppra 5,74% 4,73% 5,81% 4,92% 4,49% 3,45%
Lamictal 4,90% 4,33% 5,02% 3,91% 3,54% 3,40%
Topamax 2,23% 1,58% 1,29% 1,45% 0,86% 1,57%
Depakote 0,95% 1,10% 1,47% 1,76% 1,72% 0,83%
Trileptal 1,96% 1,47% 1,41% 1,45% 0,77% 0,61%
Vimpat 1,61% 1,72% 1,01% 0,86% 0,41% 0,31%
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
SentimeterBrands for treatment of Epilepsy (top 10 brands with most buzz)
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Q: To what extent are people positive about the different brands based on sentiment?Filter: only calculated on conversations that only contain 1 brand in order to obtain reliable results
Comparison with sentiment across brands vs top 10
Significantly higher than average
No significant difference with average
Significantly lower than average
Sentiment about Depakote is significant more positive in comparison with other brands. Comparing the current results with the results of last year (different calculation method), we observe that sentiment on Keppra decreased relatively compared to other brands.
N = 281
Vimpat
0,38
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 156
Epilim
0,33
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 221
Trileptal
0,28
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 1037
Lamictal
0,25
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 341
Topamax
0,25
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 138
Lamotrigine
0,23
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 306
0,41
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 1341
Keppra
0,21
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 129
Diastat
0,19
Depakote
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 192
Dilantin
0,14
Average 0,27
SentimeterEvolution of sentiment about Keppra and Vimpat
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Sentiment on Keppra remained stable over the last 6 months. Positivism on Depakote increased steeply whereas sentiment on Vimpat decreased over time.
Q: What is the share of voice for the different treatments for epilepsy?
Conversations about 1 brand only taken into
account
-0,20
-0,10
0,00
0,10
0,20
0,30
0,40
0,50
0,60
0,70
June-July August-September October-December
Keppra 0,2 0,22 0,22
Vimpat 0,5 0,34 -0,06
Depakote 0,35 0,21 0,68
The drop in sentiment for Vimpat is caused by people experiencing side effects from Vimpat that they did not expect from the beginning. (especially sedation and dizziness).
Over the last period, Dekapote was discussed very positively due to a specific success story with several positive reactions.
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32What did we learn so far?
Keppra is often discussed online, with a mixed
sentiment.1
Buzz and sentiment
Outtakes
Discussions on Vimpat are relatively positive. The
number of discussions on Vimpat clearly increased
compared to last year. 2
Depakote is the brand with best emotionality. This
can be explained by its good effectiveness with
relatively limited side effects3
Bottom-up segmentation
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Do people discuss multiple
drugs together?
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
Consideration setBrands for treatment of Epilepsy
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In 24% of the branded conversations, patients and caregivers discuss multiple brands.
Q: To what extent are brands mentioned together in one post?
The co-occurance of brands might be an indication of the customer consideration set
76%
19%
3%
1%
0%
0%
0%
0%
1
2
3
4
5
6
7
8
Number of brands per conversation Single conversations per brand
83%
82%
68%
67%
66%
59%
56%
55%
55%
52%
51%
42%
39%
37%
34%
Diastat
Valium
Vimpat
epilim
Keppra
Lamictal
Depakote
Dilantin
Topamax
Klonopin
Lamotrigine
Trileptal
Zarontin
Lyrica
Zonegran
Filter: only brands with at least 50
conversations are included
Ad hoc!
Consideration setBrands for treatment of Epilepsy (top 20 common combinations)
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Q: Which brands do patients/caregivers name together?
5%
2%
2%
2%
2%
2%
2%
2%
2%
1%
1%
1%
1%
1%
1%
1%
1%
1%
1%
1%
Keppra and Lamictal
Trileptal and Lamictal
Keppra and Trileptal
Keppra and Depakote
Lamictal and Topamax
Keppra and Topamax
Topamax and Trileptal
Lamictal and Lamotrigine
Depakote and Lamictal
Lamictal and Zonegran
Keppra and Dilantin
Keppra and Zonegran
Dilantin and Lamictal
Depakote and Topamax
Keppra and Vimpat
Vimpat and Lamictal
Vimpat and Trileptal
Keppra and Epilim
Depakote and Trileptal
Vimpat and Topamax
Top 20 combinations mentioned online
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
I take Keppra and Vimpat and
have had no issues with
those
The combination Keppra-Vimpat
often refers to people weaning off
Keppra for Vimpat
My doctor put me on Vimpat
twice a day and tried to
wean me off of Keppra and I
started having more
seizures. …she put me back
on Keppra
Good news!!! I have been
taking Vimpat since June
and will be off Keppra by
next Thursday.
And in some cases to a polytherapy
of the two UCB brands
Consideration setBrands for treatment of Epilepsy
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Q: Which brands do patients/caregivers name together?
DepakoteDiamox
DiastatDilantin
Epanutin
Epilim
Felbatol
KeppraKlonopinLamictal
Lamotrigine
Lyrica
Mysoline
Pregabalin
Topamax
Tranxene
Trileptal
Valium
Vimpat
Zarontin
Zoloft
Zonegran
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
How to interpret this graph?
This graph makes it possible to render the brands in a two-dimensional space. Based on correlations in the associations the respondents make, the underlying dimensions are defined. The closer two brands are plotted together, the more these brands are associated together. The further two brands are plotted from each other, the weaker the association.
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37What did we learn so far?
One fourth of conversations is about multiple drugs
and people looking for the right cocktail of
medications.
1
Consideration set
Outtakes
Most brands are both discussed for monotherapy
and as add-on.2
Keppra is often discussed together with all other
major brands (Lamictal, Topamax, Depakote and
Trileptal).3
The same conclusion is true for Vimpat, but it is
also linked with Pregabalin, Zonegran and Lyrica.4
Bottom-up segmentation
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Are some drugs linked to
specific types of epilepsy?
Link brands with epilepsy typesth
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Complex Partial
Absence
Petit mal Atonic
Clonic
Myoclonic
Tonic
Nocturnal
Temporal Lobe Grand mal
Tonic Clonic
Partial Simple
Depakote
Diastat
Dilantin Epilim
Felbatol Keppra
Klonopin
Lamictal
LamotrigineLyrica
Topamax
Trileptal
Valium
Vimpat
Zarontin
Zoloft
Zonegran
Explained variance: 37%
Ex
pla
ine
d v
ari
an
ce:
18%
Q: Which brands do patients/caregivers associate with specific types of epilepsy?
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
Brands indicated in bold refer
to a signficant loading on at
least one axis
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40What did we learn so far?
Vimpat is slightly more associated with generalized
Tonic and Clonic epilepsy.1
Link brands with epilepsy types
Outtakes
Keppra has a relatively broad positioning. It is used
for a wide range of different types of epilepsy.2
Zarontin and Dilantin are more associated with petit
mals and absences.3
Bottom-up segmentation
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Which drugs have most side
effects?
Symptoms, side effects & brandsth
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Q: To what extent is the word ‘side effect’ (and variants) used together with each brand?
Filter: only conversations about 1 brand taken into account. Only brands with 50+ conversations in isolation
taken into account
17%
15%
14%
13%
12%
12%
11%
11%
10%
7%
3%
2%
0%
Trileptal
Zonegran
Vimpat
Epilim
Lamictal
Lamotrigine
Keppra
Topamax
Dilantin
Depakote
Valium
Klonopin
Diastat
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
Symptoms, side effects & brandsth
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cardiovascularconfusion
dizziness
emotional and mood
gastro
headache
memory issues
muscles
other psychological
pain
respiratory
sleep issues and fatigue
stress
vision
weight issues
Depakote
Diastat
Dilantin
Epilim
Keppra
Klonopin
Lamictal
Lamotrigine
Lyrica
Topamax
Trileptal
Valium
Vimpat
Zarontin
Zoloft
Zonegran
Q: Which symptoms and side effects are associated with different brands?
Total sampleN = 42469
Pharmaceutical treatment N = 12754
About brandsN = 5836
This graph indicates to which extent brands are associated with
symptoms.
Qualitative analyses (later in this report)
indicate that this can be a positive or negative association. Some of the symptoms are reason to use a
particular product (e.g. Topamax is used for
headaches)
Reasons to switch drugs
Drowsiness
Eating
Mood
Anxiousnes
s
Headaches
Wear out Anger Anger
Effective
Memory Dizziness
Concentrate
Cognitive
problems
Effective
Hair loss
Eating
problems
Confusion
Concentrate
Not effective
Liver
Hair loss
Memory
Behaviour
Nausea
Weight gain
Headaches
Ineffective
Absences
Wear out
Personality
Speach
Headaches
To...F
rom
...
Effective
Effective
Mood
Dizziness
Blurry vision
Effective
Keppra
Lamictal
Topamax
Depakote
Trileptal
Vimpat
Keppra Lamictal Topamax Depakote Trileptal Vimpat
Only combinations for which at
least one reason to switch was
mentioned are included
45
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46What did we learn so far?
As side effects are an important parameter for
people to switch drugs, the success of medicines is
dependent on the severity of its side effects. The
reason to switch table indicates that switches are
often caused by too strong side effects.
1
Link brands with epilepsy types
Outtakes
Keppra is associated with emotionality and mood
problems. 2
For Vimpat, dizziness and vision problems are often
mentioned as side effects. 3
Bottom-up segmentation
47
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What are strengths and
weaknesses of top AEDs?
Strengths & WeaknessesKeppra
48
Strengths & WeaknessesKeppra
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Keppra, like most anti epileptic drugs is often mentioned in relation with its side effects.
Especially mood swings and sedation are frequently mentioned.
On the other hand, side effects are polarizing. While some people suffer from severe side
effects, others really love Keppra because of a lack of side effects.
Keppra is perceived an adequate product in times of pregnancy.
In contrast with last year, less conversations of Keppra related to hormones.
It has the advantage that you can get to a therapeutic dose fairly quickly compared to
other anti-epileptic drugs.
Considered relatively safe, also for young children
Keppra is the most frequently discussed product.
Often used in combination with B6 to reduce its side effects.
Both used in mono and polytherapy. In monotherapy, it is only expected to work from
1000mg. Twice a day doses are very common.
Keppra XR is known as an expensive drug without a generic version. It is linked with
insomnia, anxiety. People indicate side effects to be stronger with XR.
XR is often prescribed since it is covered by insurance.
We
ak
ne
ss
Str
en
gh
tsK
no
wn
fo
rX
R
Strengths & WeaknessesKeppra quotes
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50
It seems to be the seizure med with least side
effects
Keppra is great to be on when you are pregnant
It has the advantage that you can get to a
therapeutic dose fairly quickly compared to other
anti-epileptic drugs
Relatively safe
Quick
It has earned its nickname Kepprage from the
known issues of causing people to go offSide effects for
someKeppra can make you feel very tired at the
beginning
My neurologist put my on Keppra as I have some
liver issues too
Emily is also 4 and started Keppra
Strengths & WeaknessesVimpat
51
Strengths & WeaknessesVimpat
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Compared to other medications, it is relatively often associated with its side effects.
Frequently mentioned side effects are: vision problems, dizziness, insomnia, rashes,
headache and sedation.
Some patients are happy about Vimpat because of its effectiveness.
Vimpat is (correctly) considered as a new product. That‟s why people often do not know
what to expect from it.
The 50mg and 100mg doses are most commonly applied.
Weakn
esses
Str
en
gh
tK
no
wn
for
Strengths & WeaknessesVimpat quotes
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Vimpat can cause nausea and it makes me very,
very dizzy.For some people
effective, but often
with side effects
I don't know if we (the patients) know that much
about it yet. It’s new, and
therefore raises
uncertainty
… decrease the Neurontin, while he is adding
Vimpat at the same timeNot often first
medicine
prescribed, but
replacing other
meds
I just can't stand the dizziness anymore. Double
vision. No appetite.
The only major side effect I've had with Vimpat is its
interaction with Lamictal… my vision goes screwy
on me
2 patients refer to
interactions with
Lamictal
Just wondering if anyone knows or has been on
vimpat? I would like to know more about it.
I have poorly controlled seizures and have just a
few options left: Vimpat, Banzel…
Strengths & WeaknessesLamictal
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Typical side effects for Lamictal are rashes, vision problems, dizziness, insomnia and to a
smaller extent people report hair loss, weight gain and anxiety.
Lamictal is known to be a relatively safe drug. Therefore, it is often prescibed during
pregnancies (cfr Keppra).
Lamictal is both used in mono- as in polytherapy. It is often combined with a large range
of other brands, including Keppra.
Insurance companies often push patients towards the generic version of Lamictal, but
this isn‟t often appreciated by patients.Kn
ow
n f
or
We
ak
ne
ss
Str
en
gh
t
s
Strengths & WeaknessesTopamax
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An extended list of side effects is linked with Topamax. Most commonly mentioned
effects are depressions, moodiness, dizziness, short term memory loss, sedation,
communication problems, vision problems, hair loss, body temperature regulation
problems, constipation and hypoglycemia.
Topamax appears to be a good treatment against migraine in combination with epilepsy.
For some patients, topamax “gives their brain back”, whereas the memory loss is a
negative side effect for others.
Insurance companies are putting a lot of efforts in convincing patients to use the generic
version.
Topamax is often used in combination with Keppra and Lamictal.
We
ak
ness
es
Str
en
gh
tK
no
wn
for
Weakn
esses
Strengths & WeaknessesDepakote and Trileptal
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Typical side effects of Depakote are weight gains, nausea, tremors, cognitive problems
and behavioural problems.
Sentiment on Depakote is very positive. People consider it a product with a relatively
good effectiveness/side effect ratio.
Like most anti epileptic drugs, patients are polarized about Depakote. For some of them,
it works to reduce seizures, but others suffer too much from side effects to continue
treatment.
Side effects mentioned with Trileptal are dizziness, double vision, emotional
dysregulation, headache, memory problems, mood swings, speach problems and
tiredness.
Often used for partial seizures
Kn
ow
n
for
Weakn
esses
Kn
ow
n
for
Depakote
Trile
pta
l
Str
en
gh
t
STAKEHOLDERS
Buzz and sentiment on stakeholders
58
Volume
Sen
tim
ete
r
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N = 6587 (only conversations on stakeholders)
HospitalSpecialist
Psychiatrist/
psychologist
Epileptologist
Nurse
Surgeon
Dentist
Legal
Insurance
Pharmacist
Neurologist
Organisations
and institutes
GP
Patients and caregivers discuss a lot about insurance in a very negative way. Positive sentiment on nurses and surgeons.
Patients and caregivers often refer to an epileptologist. This is a neurologist
specialized in epilepsy.
The neurologist is discussed with a mixed sentiment. This professional is
extremely challenged on its ability to get the seizure under control. When he
succeeds to provide the right med or cocktail, patients tend to be positive.
Next to this, a healthy dosis of empathy can increase her or his perception.
Problems reported with Neurologists:
• Difficult to get an appointment. “It takes an age to get an appointment”
• A lack of empathy (and even attention on what the patient is saying). They
do not always listen to the complaints of patients
Neurologists?
59
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I just wanted to let you know that we see a dr. in NJ that we swear
by...we thought we had the best dr. in NY as well until she didn't
get control of my seizures. We switched neuros and have been
extremely pleased.
I have always seen neurologists and they don't seem to listen too
much!
The major role of the GP is to refer patients to the right neurologist. The
role of the GP is following up the disease and controlling the symptoms. For
quick questions, people tend to contact their GP first.
GPs mostly follow the prescription of the neurologist. They hardly change the
medication of their patients themselves.
The GP?
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Sounds like you are lucky to have a great primary
care doctor who got you to a neuro so quickly.
Reasons to go to hospital
• Often visited for epilepsy diagnosis (EEG). This can be a very long
diagnosis process (sometimes 6 days), which leads to frustration.
• When seizures are not under control or when patients are going toxic on
medications, people sometimes go to the ER
When talking about the hospital, people often refer to a lack of understanding
of the disease.
People sometimes assess the quality of the hospital by its facilities as WIFI
access. (linked with the long term stay)
Hospital?
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In my experience I have found a shocking lack of understanding
among emergency treatment personnel of seizures.
Other health care professionals?
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Nurses
Often valued for their friendliness and pro-acitivity when helping patients in their
discussion with insurance companies
Pharmacists
Sometimes disucussed negatively when they want to change the medication of the
patients.
Surgeons
It appears to be hard to find a good surgeon and patients know that there is a high
risk involved in surgeries, but overall a positive sentiment in discussions about
surgeries.
Often discussed for vagus nerve implants.
Psychologists/psychiatrists
Are expected to have only a limited knowledge about epilepsy
Sometimes consulted concerning behavioural problems
The psychiatrists usually prescribes and the psychologists gives therapy.
Insurance companies?
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People tend to be negative about insurance companies. An
explanation can be sought in their pressure on patients to look for other
(cheaper) drugs. On the other hand, looking for the right medication is often a
trial and error process and changing brands is expected to have a strong
impact on seizures and side effects. That‟s why people are very negative
about the implied pressure by insurance companies.
I know insurance companies can be a big pain in
the butt! They refuse to give me my aed because I
haven't tried two others first.
My insurance company tried to switch my daughter. I went
home and called the Neuro and she wrote a new script that
said...fill as prescribed. The insurance company then HAS to
honor and pay for the script.
Epileptic organisations?
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96
26
42
Epilepsy Foundation
of America (EFA)
National Society for
Epilepsy (NSE)
American Epilepsy
Society (AES)
Epilepsy advocate
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
0,12
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
0,29
The most commonly discussed
organisation is the Epilepsy
Foundation of America. Discussions
on this organisation are also most
positive.
People do not discuss very much
on organisations. Discussions are
more about the disease itself.
SOCIAL IMPACT EPILEPSY
A first understanding of the social impact th
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Most discussions on the social impact
of epilepsy are about the impact on
patient’s professional life and
mobility.
Epilepsy is not often considered a
stigma.
Empathy (logically) leads to very high
sentiment levels. Epileptic patients
feel a clear need for compassion.
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
0,37
58
329
857
1.094
stigmaempathymobilityprofessional life
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
0,32
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
2.08
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
0,24
Impact of epilepsy on professional lifeth
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Depending on the individual situation, patients and caregivers are raising a
lot of questions about school
Which school is most optimal?
Is an individual education plan (IEP) needed? This plan documents the medical condition of the
patient and indicates what the school should do to help in a good education.
Doubt when kids can go back to school when their symptoms are more outspoken.
Doubt if the kid will pass a day at school without seizures.
How many hours a day should the child go to school.
How does epilepsy need to be communicated to the teachers?
Does epilepsy need to be communicated anyway?
...
Some patients experiment and changing medication more after a school
period (e.g. at the end of high school)
The same issues are discussed when people are already at work
What work is most suitable? Often, working from home is an option.
Is part time working better?
...
Impact of epilepsy on mobilityth
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One of the most problematic aspects of epilepsy is that people are
often prohibited to drive. The majority of the conversations about mobility
are about this topic.
Local laws prohibit patients to drive for 6 months after a seizure. And
even if this legal period is respected, insurance companies are reluctant to
insure the patient.
Even if the patient has no seizures, there are often side effects from
medication he/she is taking.
Not only driving a car is a problem.
Bikes (and even trikes) are also avoided by many patients.
Patients are adviced not to swim and take a bath alone
Some regions offer free public transport for epilepsy patients.
The immobility handicap often leads to social isolation.
Empathy and stigmath
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Conversations on empathy and understanding have a very
positive sentiment.
Patients are in need for a good support and a listening ear, not only from family and friends, but also
from neurologists and other doctors.
Some patients are assumed to „fake‟ their seizures, which leads to enormous frustrations. Especially
in the pre-diagnosis stage, an good understanding of the patient is a problem.
Conversations on stigma are relatively limited People do not often
indicate to be ashamed about their epilepsy. When they are ashamed it is
about:
Their memory issues
Their disability card
Spasms
I don't feel ashamed about it. It just is and there's
nothing I can do about it beyond taking the drugs.
SPECIFIC QUESTIONS FROM
UCB
Attitudes towards generic productsth
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People are slightly more positive on brands. Generics are sometimes „pushed‟ by insurance companies. Still, patients and doctors do not always believe that the effects of an A brand and a generic brand are equal. Budgets and money are discussed in conversations about generics, but most discussions are about the effect of generics in comparison with other brands.
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 5836
Conversations on
brands
0,23
0
-20
10
-10
-40
-30
20
30
40
50
60
70
80
90
-50
N = 832
0,19
Conversations on
generics
Q: What is the attitude towards generic products in comparison with brands?
When I asked my neuro, he said the generics aren't
working for his patients.
My epitologist says that generic anti-seizure meds
are not as effective as the name brand
Yes, insurance companies will often change your
prescription to generics.
I always go to Boots to get mine, as they only stock
the original stuff
2% of brand
conversations is
about the budget
10% of generic
conversions is about
the budget
Who decides?th
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Neurologists decide on the chosen medication molecule and dosage. The dosage and molecule selection are often decided in an experimental way. Molecules that work for some patient do not work for others. Patients are often treated with several brands before the final brand or polytherapy is selected. A doctor can decide to change products, based both on side effects and effectiveness.
The patient impacts the product choice indirectly as it is he or she who has to live with the side effects. When side effects are intollerable, people usually switch products. Patients mostly do not ask for a product or molecule, but complain about the effectiveness and side effects prior to a switch. Sometimes, patients ask NOT to presciribe a specific brand when they know examples of strong side effects for this product.
The caregiver often has an impact when the side effects are of a behavioural or cognitive nature (anger attacks,...) In that case, caregivers make patients aware of their behaviour, and the patient mentions this side effect to the doctor.
Q: Who decides on treatment and medication?
I have been switched from … to …
Pharmaceutical companies?th
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Q: Do people discuss about pharmaceutical companies?
Pfizer: 8 conversations
UCB: 21 conversations
GSK: 3 conversations
Brands are associated with diseases, not the companies producing these brands. People do not often discuss about pharmaceutical companies. When they do, it is in most cases a a discussion about the brands the company is producing
UCB is the manufacturer of Keppra.
UCB makes Keppra and now Lacosamide (Vimpat).
Pregnancy and epilepsy?th
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As indicated in the brand analyses, discussions about pregnancy are often
about the impact that anti-epileptic drugs could have.
Two brands are considered relatively safe for pregnancy reasons. Lamictal is
discussed most often as suitable during pregnancy. Even if this is a less
optimal solution to tackle seizures, Lamictal is often prescribed. Keppra
holds a second place.
10% of pregnancy conversations mention the word Lamictal
5% of pregnancy conversations are about Keppra.
N = 276 (conversations on pregnancy)
Q: What do people say about pregnancy?
Not discussed online...th
e nex
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Specific reactions on IV treatment
Different medications provided in hospitals or ER
Reasons for compliance
76© In
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ltin
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About InSites Consulting
77© In
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In a nutshell
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Annelies Verhaege
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