5   Knowledge and information about the allergy

5.1.     Respondents’ ability to identify food ingredients of concern 
5.2.     Sources of information 
5.3.     Ease with which information about what ingredients to avoid was originally found
5.4.     Type and source of instruction on how to identify ingredients of concern on food labels
5.5.     Membership of a support group

 

5 .1   Respondents’ ability to identify food ingredients of concern (Q14)

Respondents were presented with a list of words that are used to designate substances that can be of concern to persons with various food allergies. Not all food allergies were tested at question 14 – alternative names for shellfish and sulphites ingredients not being included in the list.

Results are shown in the series of tables (a to g) that follow for total household allergies (i.e. any household that had a person with an allergy of the type concerned) for each of the substances associated with a particular food allergy.  

In each table, the 'average' or score for the total sample is presented in the column on the left side of the table. Comparisons are then made to the total or average for those with each particular food allergy.

In general, levels of awareness of a food as containing a substance of concern were higher for those with an allergy to that particular substance, compared to the total sample. However, the somewhat low levels of recognition of substances of concern appear to indicate a gap in awareness about the potential of many substances to be an issue for the person with the allergy, as can be seen in the tables that follow (5.1a-g).

The first results shown, in Table 5.1a, are for those with nut allergies (peanut and tree nuts).

Table 5.1a   Awareness of substances of concern for those with nut allergies

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	Percent correct
.	total sample	total allergies
.		Peanut (a)	Tree nuts (b)
base: all respondents ( n)	(n=510)	(n=399)	(n=279)
Peanuts	%	%	%
Praline*	34	41	46
Vegetable oil s	16	20	21
Tree nuts
Marzipan	44	b 52	a 60
Praline*	34	41	46

^ab Indicates categories where there was a significant difference between the results in each column (significance at   the 95% confidence level )
*         Praline, a nut confection, is presented twice because it can be an issue for those with either a peanut or a tree nut allergy[1] .
^s   Vegetable oil can include peanut oil.   Most peanut oils are not allergenic as they are protein free – only those that are unrefined (cold pressed) may be problematic as they may still contain traces of proteins. However, mixed vegetable oils are very unlikely to be cold pressed. Peanut, sesame or soy components of vegetable oil are now required by the Code (Standard 1.2.4) to be declared on the food label.

For each of the substances listed, there was a higher than average recognition that praline and marzipan were substances of concern for both of the nut allergies, significantly so for marzipan. However, very few of those with peanut allergies in the household indicated thatvegetable oilcould be an issue, with only one in five respondents with peanut allergies (20%) in their household identifying this ingredient. It is not known whether this was because they had already found vegetable oil to be a minimal or no risk, or whether respondents were not aware that some vegetable oils may potentially contain cold pressed peanut oil, or whether the labelling was adequate (as mentioned previously, ingredients of vegetable oils that are potential allergens are now required under the provisions of the Code, to be declared) [2] .  

The results are shown for milk allergies in Table 5.1b.

Table 5.1b    Awareness of substances of concern for those with a milk allergy

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	PERCENT correct
.	total sample	total allergies
.		Milk
base: all respondents ( n)	(n=510)	(n=200)
Milk	%	%
Whey	29	72
Butterfat	29	72
Lactose	28	68
Casein	26	64
Lactalbumin	23	42

Between a quarter (23% for lactalbumin) and three in ten respondents (29% for both whey and butterfat ) on average identified the milk derivatives as substances of concern.

Between two thirds (64% for casein) to three quarters of respondents (72% for both whey and butterfat) identified the substance of concern for milk allergens. The lowest awareness amongst respondents who had a milk allergy in the household was recorded for lactalbumin, with only 42% identifying this substance.

Compared to the data shown in Table 5.1a for those with nut allergies, recognition of most substances of concern for those who have a milk allergy in the household was much higher (64%-72%, compared to 20%-60% for nut allergies).  

The results are shown for those with a soy allergy in Table 5.1c.

Table 5.1c  Awareness of substances of concern for those with a soy allergy

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	Percent correct
.	total sample	total allergies
.		Soy
base: all respondents ( n)	(n=510)	(n=78)
Soy	%	%
Tofu	8	46
Textured vegetable protein	18	36
Tempeh	5	13
Tamari	4	10

Almost a half of respondents (46%) recognised tofu as containing a substance of concern, and around a third recognised that there could be an issue with textured vegetable protein (36%). However, there were low levels of recognition for both tamari (10%) and tempeh (13%), which may in part be due to a lack of recognition that the ingredients or products listed (tempeh, tamari) contain soy.  

The results are shown for those with a wheat allergy in Table 5.1d.

Table 5.1d  Awareness of substances of concern for those with a wheat allergy

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	PERCENT correct
.	total sample	total allergies
.		Wheat
base: all respondents ( n)	(n=510)	(n=66)
Wheat	%	%
Baker's flour	9	56
Thickener*	14	50
Semolina	7	38
Couscous	6	32
Cornflour s	5	29
Starch	5	29
Icing sugar mix	5	27
Textured vegetable protein	18	27
Maltodextrin u	5	18

^s     Cornflour could be derived from maize or wheat.
^u      Maltodextrin could be derived either from wheat or maize.
*   Some thickeners are wheat derived.

A half or more of those respondents where a wheat allergy was present in the household were aware that baker's flour  and thickenerwere substances of concern, with 56% and 50% respectively identifying these substances. Around a third were aware that semolina (38%) and couscous (32%) were of concern.

Maltodextrin was the least likely ingredient to be identified, with only 18% nominating this as a substance of concern.  

It should be noted that in the Code, where a cereal or source of starch is wheat, rye, barley, oats or spelt then the specific name of the cereal must be declared (Standard 1.2.4).

The results are shown for those with an egg allergy in Table 5.1e.

Table 5.1e   Awareness of substances of concern for those with an egg allergy

Q14    Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	PERCENT correct
.	total sample	total allergies
.		Egg
base: all respondents ( n)	(n=510)	(n=272)
Egg	%	%
Albumin	37	67
Ovalbumin	25	45

Around two-thirds of respondents with an egg allergy in the household (67%) were aware that albumin  was a substance of concern, however less than half (45%) identified ovalbumin as being of concern.

The results are shown for those with fish allergies in Table 5.1f.

Table 5.1f     Awareness of substances of concern for those with fish allergies

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	PERCENT correct
.	total sample	total allergies
		Fish
base: all respondents ( n)	(n=510)	(n=83)
Fish	%	%
Anchovies	13	59
Surimi*	6	18

* Depending on the manufacturers formulation, surimi could also contain eggs, wheat, and shellfish

Over half of those with a fish allergy in their household (59%) recognised that anchovies were a substance of concern.

Of some concern was that the level of recognition of surimi  was very low.   Only 6% of the total sample identified it and only around one in five of those had a fish in the household (18%). However, this could also indicate that many consumers did not know that ‘surimi’ was the more technical name for 'imitation crab stick' or ‘seafood extenders’.

The results are shown for those with a sesame seed allergy in Table 5.1g.

Table 5.1g     Awareness of substances of concern for those with a sesame seed allergy

Q14   Which of the following words tell you that the ingredients that the person with the most serious food allergy needs to avoid, may be present in the food product?   PLEASE TICK ALL THAT APPLY

.	PERCENT correct
.	total sample	total allergies
		Sesame seeds
base: all respondents ( n)	(n=510)	(n=72)
Sesame seeds	%	%
Tahini	15	62

Three in five of the respondents with a sesame seed allergy (62%) recognised thattahiniwas a substance of concern.

Summary

The results suggest that while there was a reasonable level of recognition of common ingredient names for potential allergens, this was not universal. It decreased markedly with less common names and/or more ‘scientific’ terminology.

Across the different sample sources, those derived from the support group sample were consistently more proficient at identifying many of the substances of concern, than were those from the two medical groups. The next most proficient was the hospital or institutional sample and the least proficient was the private clinicians [3] sample. These results suggest that respondents who belonged to a support group were better informed about substances of potential concern.

5.2   Sources of information (Q18)

Respondents were asked where they had obtained relevant information about the foods to avoid when the food allergy first became an issue for their household. The sources indicated are shown in Table 5.2.

Table 5.2     Information sources for the allergy

Q18  When a serious food allergy first became an issue in your household, where did you get the relevant information about what food(s) and food ingredients(s) needed to be avoided?   PLEASE TICK ALL THAT APPLY

.	total sample	country
Information obtained from. …		Australia (a)	New Zealand (b)
base: all respondents ( n)	(n=510)	(n=413)	(n=97)
	%*	%*	%*
A doctor specialising in allergies	78	b 81	a 66
An allergy support group	39	38	46
A dietitian	36	37	34
Books	36	37	31
A GP / doctor / medical practitioner	32	32	33
The web / Internet	31	32	29
A friend / acquaintance	13	14	10
Parents	8	8	10
The Manufactured Food Database s	7	b <1	a 35
An alternative health practitioner	6	b 4	a 12
Trial and error	3	4	2
Pharmacist	1	2	0
Food manufacturer	1	1	0

^ab   Indicates categories where there was a significant difference between the results in each column (significance at the 95% confidence level)
*   Adds to more than 100% due to multiple responses (i.e. people may have obtained information from more than one source).
^s    The Manufactured Food Database was not an option provided for in the Australian questionnaire but it was added by several Australian respondents as another source of information.

Three quarters of respondents (78%) said their major source of information was a doctor who specialises in allergies.  The level recorded in Australia was significantly higher than that in  New Zealand(81% versus 66% respectively).

The next major sources of information for around a third of respondents were:

• an allergy support group (39%);
• a dietitian (36%);
• books (36%);
• a GP / doctor / medical practitioner (32%); and
• the web or Internet (31%).

A third of New Zealand respondents (35%) identified the MFD as a source of information  [4] . Even though this was a New Zealand initiative, a very small number of Australian respondents(<1%) also identified this source via free text option given in this question.  

New Zealanders were significantly more likely than Australians to nominate an alternative health practitioner as a source of information (12% versus 4% respectively).  

5 .3  Ease with which information about what ingredients to avoid was originally found (Q19)

Respondents were asked whether they had found it easy or difficult to get the information they needed to help them avoid the foods of concern, when the allergy was first diagnosed. The results are shown in Table 5.3a.

Table 5.3a   Ease of getting information when allergy first identified

Q19  When a serious allergy was first identified, was it easy or difficult to get the information you needed to help you avoid the foods of concern?  

.	total sample	sample source			time since allergy identified
.		Hospital (a)	Private (b)	Support Groups (c)	Less than 1 year (d)	More than 1 year but less than 2    (e)	2 years or more (f)
base: all respondents ( n)	(n=510)	(n=162)	(n=174)	(n=174)	(n=70)	(n=78)	(n=360)
	%	%	%	%	%	%	%
It was easy	46	c 54	c 54	ab 32	ef 64	d 47	d 42
It was difficult	49	c 40	c 41	ab 66	ef 34	d 50	d 52
Don't know	4	5	5	2	1	1	5
Not answered	1	1	1	0	0	1	1
Total	100	100	101*	100	99*	99*	100

*   Does not add to 100% due to rounding.
^ab  Indicates categories where there was a significant difference between the results in each column (significance at   the 95% confidence level )

About the same proportion of respondents found it difficult (49%) as found it easy (46%) to find the information they needed when the food allergy was first diagnosed. Four percent said they could not remember how easy or difficult it had been.  

Respondents from the support group sample were significantly more likely to say they found it difficult  (66%) than those in both of the 'official' sample groups (i.e. hospitals or medical institutions or private clinicians) for whom 40% and 41% respectively said it was difficult. Since the majority of the support group sample said they were officially diagnosed by hospital or by a private immunologist, it is quite likely that they joined the support group in order to obtain the information they felt they needed, following diagnosis.  

Respondents for whom the allergy had been identified more recently (within the last year) were significantly more likely to say they found it easy to find what they needed (64%), than those where the allergy had been identified long ago. In fact, ease diminished the farther ago identification had been, for example 47% where the allergy had been identified more than one year but less than two years ago, and 42% where the allergy had been identified more than two years ago.

Those with a fish allergy  were significantly more likely to say they found it difficult to get the information they needed, with 61% saying this [5] .

There was no significant difference in perceptions between the two countries.

Respondents were then asked to indicate what they found easy and what had been difficult about finding information when they first had the diagnosis. The question was open-ended and responses given were later coded for analysis. Major responses are displayed in Table 5.3b.

Table 5.3b   Ease with which information was found

Q19a  What made it easy / difficult?  

.	total sample	country
.		Australia (a)	New Zealand (b)
base: THOSE WHO SAID IT WAS EASY/DIFFICULT (n)	(n=487)	(n=392)	(n=95)
Easy	%*	%*	%*
Help from medical source (GP, allergists, hospital)	14	14	14
By avoiding the substance	11	11	10
Support from dietitian	10	9	14
Member of a support group	8	9	6
Reading widely	6	8	0
Websites / Internet	6	6	6
Check all products	5	5	3
Difficult
Too many names for the same thing	15	14	18
Hidden sources of the ingredient	10	b 9	a 15
Lack of/ or conflicting information	10	b 8	a 19
Inconsistent labelling	8	9	7
Lack of help from GP / health professionals	7	b 4	a 17
Traces of nuts found in too many products	5	5	3
'May contain' statements too widespread	4	5	4
Lack of support group	4	4	2
Not answered	3	3	3

^ab Indicates categories where there was a significant difference between the results in each column (significance at   the 95% confidence level )
*  Adds to more than 100% due to multiple responses.

The major reasons given for what made it easy to find the information that was needed was that the GP [general practitioner]  or  medical practitioners gave some assistance (14%); respondents could avoid the substance (unspecified how) (11%) or they had support from a dietitian (10%).

The main reasons it was difficult  was that there were too many names for the same thing (15%); there were hidden sources of the ingredient (10%) and that there was a lack of / or conflicting information (10%).  

These last two reasons were more likely to be stated by the New Zealand sample rather than the Australian sample, as shown in the table. New Zealanders were also significantly more likely to say that there was a lack of help from their GP or health professional than Australians (17% versus 4% respectively).

Those who had a wheat allergy in the household were significantly more likely than those with other food allergies to say that it was easy because they were a member of a support group (14%). Those who had sulphite or sesame seed allergies in their household said they had help from their GP, and this made it easier (21% and 27% respectively). Those who had milk,  soyor wheat allergies in their household said that it was difficult because there were so many names for the same thing (22%, 24% and 23% respectively). Those with a fish allergy in the household said their major difficulty was that there was a lack of /or conflicting information (19%) [6] .

5 .4  Type and source of instruction on how to identify ingredients of concern on food labels (Q20)

Respondents were asked whether they had been given any instruction about how to identify the ingredients of concern on food labels. Results are shown in Table 5.4.

Table 5.4   Instruction received on how to identify ingredients of concern on food labels

Q20a  Were you shown at any time how to identify the ingredients of concern, using food labels?  

.	total sample	Sample source
		Hospital (a)	Private (b)	Support Groups(c)
base: THOSE FORMALLY DIAGNOSED ( n)	(n=496)	(n=158)	(n=168)	(n=170)
.	%	%	%	%
Yes	46	b 48	ac 38	b 51
No	51	b 46	ac 59	b 48
Don't know	3	c 6	3	a 1
Not answered	<1	1	1	0
Total	100	101*	101*	100

^abc   Indicates categories where there was a significant difference between the results in each column (significance at   the 95% confidence level )
*    Does not add to 100% due to rounding.

Of some concern is the fact that half of those who had a person 'at risk' of a serious food allergy in their household,  said they had not been shown how to identify the substance of concern, using food labels.

Respondents from the private clinician sample were least likely to say they had received instruction about reading food labels to identify substances of concern. Three in five (59%) of this group said they did not receive any instruction, compared to half (48%) of those from the support group sample, and a similar proportion (46%) from the hospital sample.  

There was no difference by country.

5.5  Membership of a support group (Q21)

Respondents were asked whether they belonged to a support group. A half (51%) said they did belong to a support group. Membership levels were higher in  New Zealand  sample than in Australia (67% versus 47% respectively), but since more questionnaires were sent out via the main support group in New Zealand, this is not surprising.  

Those who were members were then asked to write in the name of the support group they belonged to. Results are shown in Table 5.5.

Table 5.5   Membership of support group

Q21a Have you joined any group that provides information about food allergies?   IF YES: Q21b  What is the name of the group you joined?

.	total sample	Sample source			country
.		Hospital (a)	Private (b)	Support Groups(c)	Australia	New Zealand
base: all respondents ( n)	(n=510)	(n=162)	(n=174)	(n=174)	(n=413)	(n=97)
Australia	%	%	%	%	%	%
FACTS	35	bc 22	ac 10	ab 73	43	0
New Zealand
Allergy New Zealand	12	c 5	c 9	ab 22	0	64
Other groups	4	3	4	2*	4	3
No memberships	48	c 69	c 76	ab 2*	52	33
No answer	1	1	1	1	1	0
Total	100	100	100	100	100	100

^abc Indicates categories where there was a significant difference between the results in each column (significance at   the 95% confidence level )
*   This was due to requests for questionnaires prompted by other sources such as manufacturing industry referrals, which were included in this category.

The primary support group mentioned in Australia was the then Food Anaphylactic Children Training and Support Association (FACTS), now called Anaphylaxis Australia Inc. Seventy three percent of the total Australian sample recruited via a support group, belonged to this organisation. In New Zealand, the primary support group was Allergy New Zealand, with 64% of the total New Zealand sample belonging to this group. Since these two organisations were used to locate some of the sample, it is understandable that the proportions of respondents nominating each of these two groups would be high.  

Looking across the other two sample segments (i.e. hospitals and private clinics) the levels of membership were much less, as shown in table 5.5. Thus, two thirds of the hospitalsample (69%) and three quarters of the private cliniciansample (76%) were not members of any support groups. The corollary of this is that about a quarter (24%) to three in ten (30%) of respondents who were derived from 'official' sources belonged to a support group.  

Note: In the following text the actual numbers of respondents answering are shown in brackets.

Respondents were more likely to belong to a support group if [7] :

• the allergy had been diagnosed more than two years ago. Fifty four percent of respondents were members (194 respondents) compared to 39% (70 respondents) of those where the allergy had been diagnosed less than one year ago. Note that the propensity to belong to a support group increased along with the time since diagnosis, suggesting that opportunity may play a part in membership;
  
  
• the person with the most serious allergywas a child. Fifty four percent of respondents who said the person with the most serious allergy was a child (250 respondents) versus only 20% (9) where the respondent themselves had the most serious allergy, belonged to a support group. In fact, membership was significantly higher amongst respondents where the child concerned was aged between three and twelve years old, than amongst other age groups. Three quarters of adults with the most serious allergy (74% or 42 respondents) did not belong to a support group;
  
  
• the respondent was female. Fifty two percent of female respondents (249) said they were a member of a support group compared to 33% (10) of male respondents [8] .
  
  
• the respondent was educated beyond secondary level. Only 43% (63) of respondents with secondary only education belong to a support group, compared to 55% (122) of those with some or completed tertiary study, and 51% (74) of those who have some or completed trade or technical study were members of a support group; and
  
  
•  the respondent had a mid-high gross household income. Where the household had mid to high gross income levels, the propensity to belong to a support group was higher. That is, 56% (118) of those earning more than $75,000 and 52% (89) of those earning between $40,000 and $74,999, were members, compared to 40% (15) of those earning less than $25,000 [9] and 35% (23) of those earning between $25,000 and $39,999.

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