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TMAU questionnaire – results of online
survey
Heidi Chan & Charlotte Ellerton
Metabolic Dietitians
National Hospital for Neurology and Neurosurgery
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
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
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
How did you find out more about
TMAU?
Internet
Television
Newspaper/magazines
Friend or relative
GP
Not answered
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
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
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
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
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
Did you make any dietary changes before you
received your diagnosis?
Dietary changesmade beforediagnosis
No changes beforediagnosis
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
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)
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
%
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 %
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
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
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
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
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
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
What else do you use to manage symptoms?
0
10
20
30
40
50
60
70
Probiotics Antibiotics Riboflavin Gut
absorbers
Laxatives None
Antibiotic use
Every 6-8 weeks
Every 3 months
Every 6 months
6-12 months
Never
Continuous (againstmedical advice)
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
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
Do you feel TMAU prevents you from carrying out
your usual activities?
(work, study, family and leisure activities)
26%
55%
19%
Yes
Sometimes
No
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
If you feel your mental health has been affected
by TMAU, do you receive any professional
support?
24%
76%
Yes
No
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
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
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
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
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
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