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