tmau questionnaire – results of online surveyeurordiscloud.s3.amazonaws.com/tmau questionnaire -...
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TMAU questionnaire – results of online
survey
Heidi Chan & Charlotte Ellerton
Metabolic Dietitians
National Hospital for Neurology and Neurosurgery
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Aims of the survey
• Keen to understand more about how people with TMAU were managing their condition on a day to day basis
• Improved knowledge of how restrictive people were being with their diet
• Appreciate how much time, effort and money was being spent on management of symptoms
• Overall aim was to improve dietary advice provided to our patients
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Survey details
• The survey was conducted between March and
June 2012
• Survey developed on Survey Monkey website
• Website link provided to people in their
outpatient appointment, and emailed out
• Advertised on TMAU forum for people not seen
at NHNN
• 5 sections to the questionnaire: diagnosis and
symptoms, dietary information, non-dietary
information, living with TMAU and demographic
details
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Survey results - diagnosis
• In total, 96 people started the survey, and 84 completed (87.5%) it
• 90% of respondents had a positive diagnosis of TMAU; 10% had received a negative diagnosis
• Over 50% of these patients had their diagnosis made by a specialist consultant, 30% were diagnosed by their GP and the remaining 20% specified “Other”, which was most commonly Dr Manning in Sheffield
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How did you find out more about
TMAU?
Internet
Television
Newspaper/magazines
Friend or relative
GP
Not answered
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How long did you have symptoms
before you were diagnosed?
10 years or longer
5-10 years
1-5 years
Less than 1 year
Not answered
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How has the odour been described?
• Despite TMAU also being known as “fish odour syndrome”, the most common description for the odour was faecal (48%)
• Others also described it as fishy, or similar to garbage
• A smaller number described it as smelling similar to burnt rubber
• Other descriptions included musty, rotten meat, and similar to ammonia
• Respondents also reported descriptions of the odour could be varied, and also that the odour could change over time
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Are you aware of your symptoms?
Yes, always
Sometimes
No
The majority of respondents indicated they were themselves aware of their
symptoms at some times
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What makes your symptoms worse?
65
59
47
3
28
0
10
20
30
40
50
60
70
Certain
foods
Stress or
anxiety
Menstrual
cycle
None of
these
Other
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What makes your symptoms worse?
“Other” included the following responses:
• Some medications
• Coffee
• Alcohol
• Time of year or weather
• Exercise
• Sweating
• Contraceptives
Several respondents expressed difficulty in
determining what factors can exacerbate symptoms
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Did you make any dietary changes before you
received your diagnosis?
Dietary changesmade beforediagnosis
No changes beforediagnosis
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Choline restricted diet
• Restricting choline is the main dietary
treatment suggested for management of
TMAU
• The majority of respondents try to restrict
choline in their diets (84%)
• 16% of respondents do not follow a
restricted choline diet
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If you follow a restricted diet, how strict are you?
0
5
10
15
20
25
7
days
6
days
5
days
4
days
3
days
2
days
1 day
Respondents were asked how many days of the week they
follow the diet for:
Number of
respondents
(total = 75)
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Commonly avoided foods
0
10
20
30
40
50
60
70
80
90
100
whole
eggs
egg yolk offal liver and
liver
products
poultry beef pork bacon veal red meat
Percentage of
respondents
%
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What types of milk do you avoid?
0
10
20
30
40
50
60
70
80
Cow's milk -
skimmed
Cow's milk -
semi-
skimmed
Soya Sheep & Goat
Percentage of
respondents %
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Low choline milk alternatives
Type of milk Number
Coconut (Kara) 13
Rice 18
Rice with added calcium 17
Oat 7
Oat with added calcium 3
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Do you avoid fish?
• 90% did not eat any fish products e.g. fish paste, fish cakes, fish oils
• Literature suggests that freshwater fish does not contain trimethylamine, therefore this should not exacerbate symptoms
• In the survey, 78% stated that they avoid freshwater fish which suggests that some people may be uncertain about consuming this or feel it does exacerbate symptoms
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What cheeses do you avoid?
0
10
20
30
40
50
60
70
80
90
Cream Cottage Cheddar hard e.g.
Parmesan
Blue Goats Camembert Brie
Pe
rcen
tage %
of
resp
on
dents
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Other foods avoided?
• 57% avoided lecithin containing foods such as chocolate, ice cream, margarine, mayonnaise
• 71% avoided Marmite and other yeast extracts
• Other commonly avoided foods included:
- E numbers, additives and preservatives
- Sulphur
- Onions and garlic
- Cola
- Oils and fried foods
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Alcohol
• 34% of respondents felt that alcohol affected their symptoms and of these 67% avoid alcohol to manage their symptoms
• 32% were unsure if alcohol exacerbated their symptoms
• For those that consumed alcohol, 56% reported that they always, or sometimes would consider the choline content of their drink if they were to consume alcohol
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What side effects have you experienced from
restricting your diet?
0
5
10
15
20
25
30
35
Weight loss Weight gain Lethargy Vitamin and/or
mineral
deficiency
None
Nu
mb
er
of “Y
es”
resp
on
se
s
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What else do you use to manage symptoms?
0
10
20
30
40
50
60
70
Probiotics Antibiotics Riboflavin Gut
absorbers
Laxatives None
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Antibiotic use
Every 6-8 weeks
Every 3 months
Every 6 months
6-12 months
Never
Continuous (againstmedical advice)
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Which treatments do you feel are most effective
in managing TMAU?
0
5
10
15
20
25
30
35
40
45
Choline
restricted
diet
Antibiotics Probiotics Riboflavin Gut
absorbers
Soaps None
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How much do you typically spend on
products per month?
Less than £10
£10- £20
£20 - £30
£30 - £40
£40 - £50
More than £50
54% of respondents spend between more than £20 per month on products to
manage their TMAU
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Do you feel TMAU prevents you from carrying out
your usual activities?
(work, study, family and leisure activities)
26%
55%
19%
Yes
Sometimes
No
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Would you describe yourself as experiencing
any of the following conditions?
0
10
20
30
40
50
60
70
80
Social anxiety Anxiety Depression Paranoia Agoraphobia None of these
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If you feel your mental health has been affected
by TMAU, do you receive any professional
support?
24%
76%
Yes
No
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What improvements or changes could be made to
help people with TMAU? • More awareness and education amongst
healthcare professionals
• Campaign to raise awareness for general public,
including schools and workplaces
• Improved access to services locally
• Research into treatments and cure
67% of respondents felt managing their TMAU was
easier once they had received a confirmed
diagnosis
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What improvements or changes could be made
to help people with TMAU?
• Opportunities to meet others with the same
condition, including support groups
• Updated USDA database on choline
content, or UK version, including information
on portion sizes
• Newsletter including updates on medical
treatment, diet, recipes etc
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Implications of survey results • Concerns about severity of dietary restriction
and impact on nutritional status
• Restriction of dairy products increases risk of calcium and Vitamin D deficiency
• Restriction for majority of the week increases risk of micronutrient deficiency (such as iron and Vitamin B12)
• Need for more foods to be analysed for choline content
• Need to improve dietary education to avoid excessive restriction of foods
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Implications of survey results
• Concern about use of frequent antibiotics and laxatives
• Encourage healthcare professionals to recognise anxiety and social difficulties are a significant part of living with TMAU, and allow patients to access support locally
• Need for more support within TMAU community – consider mentor or buddy system?
• Spreading awareness to GPs or other healthcare professionals through education sessions or professional publications?
• Need to raise awareness and understanding amongst the public
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Professional support
• It is important to remember that everyone
is different and what treatment works for
one person, may not be appropriate or
effective for another
• We encourage everyone to seek
professional advice regarding
management of symptoms
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Last but not least….
• We would like to say a big thank you to all
of those who gave up their time to
complete the survey
• We hope to publish the full results in a
professional journal and relevant websites
to spread awareness amongst
professionals and the public