Dr Audrey DunnGalvin PhD, Reg.Psychol...
Transcript of Dr Audrey DunnGalvin PhD, Reg.Psychol...
The consumer perspective :
living with uncertainty
Dr Audrey DunnGalvin PhD, Reg.Psychol PsSI,BPS.
Growing up with food allergy : impact on psycho-social development.
Living with uncertainty
Labelling
Thresholds What can we do to decrease uncertainty and improve quality of life
for consumers?
Claire, mother of Becky, age 10, and Jane, age 13, U.S.
Family life can be difficult enough..but
when you add food allergy to the mix
those difficulties are multiplied’
THE PROBLEM
Living with ‘labelling’ and ‘thresholds’ means ‘living with uncertainty’
All Science involves making decisions
based on the available data....
Janet, mother of Ciara, diagnosed with peanut and nut allergy at 3
years, Ireland.
‘I was shocked when Ciara was diagnosed and I seemed to be given a list
of rules based on complete avoidance.......but what about the evidence for
that...it seems conflicting and confusing ....I would like to make more
informed choices’
‘Uncertainty’ constitutes a major obstacle to
constructive decision making in human beings of all
ages.
DunnGalvin, & Hourihane, Developmental aspects of HRQL in food related chronic disease (2011) The International Handbook of Behaviour, Diet and Nutrition ; Springer, US.
Today your child has tolerated a food challenge to a very low trace dose of peanut. What does this mean? This suggests that if your child eats a food product which contains precautionary labelling (e.g. ‘may contain traces of nuts’ statements) in the future, he/she is at extremely low, but not zero, risk of having an allergic reaction. As usual, any packaged good can be accidentally contaminated with larger amounts of peanut protein, and hence an unpredictable allergic reaction to such foods can occur.
Food Challenge
Labelling
Robertson in press
Irish confectionery survey
“May Contain”
“Shared equipment”
“Shared facility”
“Minor ingredient”
Total
Baked 2 1 3
Biscuits 6 1 1 1 9
Cereal bars 2 1 (1) 1 4 (1)
Chocolates 9 (1) 6 15 (1)
Sports/ energy bars
5 2 7
Total 22 (1) 1 3 (1) 8 38 (2)
Robertson in press 1/22 “may contain” do contain 1/3 “shared facility” do contain 0/8 “minor ingredient” actually contain!!!
Irish confectionery survey
Label Number tested
Concentration Dose per serving
Chocolate “May contain peanut”
3 1 positive
25.8mcg/g BLD BLD
0.52mg <0.05mg <0.05mg
Cereal bar “Shared facility” 4 4 positive
3.0 mcg/g 2.8 mcg/g 7.4 mcg/g 6.2 mcg/g
0.14mg 0.13mg 0.33mg 0.28mg
Robertson in press
****All doses 1 log lower that peanut ED5: 6mg
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Precautionary labelling – paradoxically - can lead to
both increased anxiety and/or risk
DunnGalvin, A & Hourihane, J O’B. Developmental aspects of HRQL in food related
chronic disease (2011) The International Handbook of Behaviour, Diet and
Nutrition ; Springer, US.
Children, teens and parents need to cope
with normal developmental changes
Children, teens and parents need
to cope with Constant vigilance
May contain used as a ‘safety net’ Food challenge as diagnosis vs safe level
Confusion how much allergen is required to cause a
reaction, and how severe this reaction might be.
Labelling is perceived to be unreliable
Allergic reactions are perceived to be
unpredictable
A reduced public trust in safety of food
labelling
Low perception of control and uncertainty
Increased Pyscho-Social Stress : Children, teens and parents anxious,
avoidant or overprotective, frustrated, unsure, worried, stressed, angry ...
Risk and vulnerability (emotional adjustment /safety)
Low Confidence in coping and decision making
Quality of Life
It is not surprising, therefore, that food allergy (and it’s management)
has a large impact on development and on quality of life in
psychological, emotional and social domains.
DunnGalvin A, & Hourihane JO’B. Developmental trajectories in allergic diseases: A review. Advances in Food and Nutrition
Research, 2009 Volume 56 Elsevier Inc.
DunnGalvin, A.,de Blok, B.M.J. Dubois, A., Hourihane, J.O’B (2008). Development and Validation of the Food Allergy Quality of
Life – Parent Administered Questionnaire(FAQLQ-PF) for food allergic children aged 0-12 years. Clinical and Experimental
Allergy, 38; 977-986
DunnGalvin, A Cullinane , C Daly, D Flokstra-de Blok BMJDubois AEJ, Hourihane JO’B..Longitudinal validity and
responsiveness of the Food Allergy Quality of Life Questionnaire – Parent Form (FAQLQ-PF) in children 0-12 years
following positive and negative food challenges. Clin Exp Allergy.2010 Mar;40(3):476-85
Flokstra-de Blok BMJ, DunnGalvin A, Vlieg-Boersta BJ, Oude Elberink JNG, Duiverman EJ, Hourihane JO, Dubois AEJ.
Development and validation of a self-administered Food Allergy Quality of Life Questionnaire for children. Clin Exp Allergy
2009;39:127-137.
Flokstra-de Blok BMJ, DunnGalvin A, Vlieg-Boerstra BJ, Oude Elberink JNG, Duiverman EJ, Hourihane JO, Dubois AEJ.
Development and validation of the self-administered Food Allergy Quality of Life Questionnaire for adolescents. J Allergy
Clin Immunol. 2008 Jul;122(1):139-44, 144.e1-2.
Quality of Life in Food Allergy
(Europrevall, FP6)
Similar patterns of responses
across countries at 12 months
Highest impact in items relating to
social and dietary restrictions,
including fear of new foods, new
people and new places.
DunnGalvin et al. Cross-Cultural Comparison of the Food Allergy
Quality of Life Questionnaire (FAQLQ-PF) on four continents
‘I made up reasons for him not to be out and I was very very
protective of him and wouldn’t let him have the freedom, I
was so paranoid that something was going to happen to him’
Mother of Sam, 13, UK
Living and coping with food allergy.....
………. is a cumulative history of interactive processes (both age and disease specific) that are embedded in a child’s developmental pathway, therefore...
Growing up with ‘uncertainty’ has a profound and longterm impact.
DunnGalvin, A & Hourihane, J O’B. Developmental aspects of HRQL in food related chronic
disease (2011) The International Handbook of Behaviour, Diet and Nutrition ; Springer, US.
DunnGalvin A, Gaffney A, Hourihane JO’B. Developmental pathways in food allergy : a new theoretical model Allergy, 2009; 64, 560-568
DunnGalvin A, Burks, WJ, Dubois AEJ, Chang WC, Hourihane JO’B. Profiling Families Enrolled in Food Allergy Immunotherapy Studies, Pediatrics 2009;124 e503-e509
DunnGalvin A, & Hourihane JO’B. Developmental trajectories in allergic diseases: A review. Advances in Food and Nutrition Research, 2009 Volume 56 Elsevier Inc.
CASE STUDIES
Emma & Peter
‘Food Allergy Matters’ : Evidence-based efficacy of an intervention developed to
moderate the psychological impact of food allergy, using a controlled design.
DunnGalvin & Hourihane (submitted).
• Emma (6 years) presented as an anxious child, who was very
dependent on Mum.
• She was emotionally mature for her age, in her manner and thought processes. Mum
scored Emma very highly on the ‘Food anxiety’ subscale of the FAQLQ-PF (6 out of
7). She was highly fearful of anaphylaxis and would interpret many social situations
(e.g. going to the cinema) as ‘scary’. She would also ask Mum again and again to check
if packaging contained peanuts.
• We describe Emma as ‘anxious/avoidant ‘ and the emotions and behaviours
associated with being careful about food were now generalising to all life situations,
so that she was fearful of any ‘new’ people and places. Both Mum and Emma cried
as they described what it was like to live with food allergy. Neither felt that they
were ‘in control’ of the everyday management of allergy.
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Peter (12 years) presented as a confident and articulate child. ◦ He has had experienced anaphylaxis twice in the relatively recent past, and Mum
was very worried. Peter scored highly (5.2) on the third subscale of the FAQLQ-PF impact of ‘social and dietary restrictions’.
Peter, thinks wishfully of food he would like to eat and/or being no longer allergic.
He is very frustrated by the ‘rules’ feels that they ‘are pointless’ because of the uncertainty of allergic reactions, labelling of ingredients, and low awareness. He compares his life very unfavourably with other children and he expects a negative reaction if he tells peers of his allergy.
He has begun to take risks (such as not reading labels, not telling
others of his allergies). ◦ As his way to try and exert control over uncertain conditions. He resents
parental protection which he regards as ‘nagging’ and sometimes ‘forgets’ his pen.
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THE SOLUTION ?
• Current risk hazard approaches perpetuate uncertainty and studies have shown that consumers, clinicians, regulators and food industry want a ‘better’ way of risk assessment and management.
Therefore ... ... ... • Can we translate the science on thresholds into meaningful
strategies (labelling of allergens, or to communicating information) in order to reduce uncertainty and improve quality of life ?
John (16 years, US).
‘Instead of ‘dos and don’ts’ – how about some scientific facts so can make
own judgement calls ?’
We consulted over 600 participants (Europe & UK) in focus
groups, interviews and via an online survey
With the aim of integrating perspectives from clinicians, industry,
and consumers on labelling and thresholds and
To identify concerns which must be addressed in order to
develop harmonised approaches and strategies ... ...
... that actually work,
... that will be accepted,
... and that can be communicated clearly.
Translating science into meaningful strategies for consumers, clinicians and industry. DunnGalvin,
Baumert, Taylor, (in preparation)
The qualitative analysis revealed 4
main themes :
1. ‘The reality of living with risk’
1. ‘Maintaining a balance’
1. ‘Feeling informed and in control of risk management’
1. ‘Communicating thresholds’.
‘Feeling informed & in control of risk
management’
Consumers understand that zero risk is not possible...but they do want
more control
‘A safe level to tell friends, you
can’t give a life time of knowledge
in a hour’
‘You have to take risks but ... this would be a
calculated risk ... which would give you a lot more
control’
‘The more precise and consistent information you have, the
more informed the decisions you can make’
‘I want to be in control of
my health and wellness, to
manage or improve it
through making better
choices’
‘If the threshold at
which he reacts
could be used in a
practical way, then
far more helpful
than the labelling
we have now’
Isobel, Age 20, Ireland Dad of Jamie,
Age 4, UK.
Kate, Age 20, UK.
Mum of Caoimhe &
Brian, Ireland
Andy, Age 30, US
‘When I first thought about the whole concept, I said, ‘oh no’ but I am really
coming round to it...it’s quite an easily understandable idea really when you
explain it, and it’s what we do ourselves anyway alot of the time’
Helen, Mum of Daniel,US
Consumer
‘Communicating thresholds’
‘Why can’t we be involved ...we’re the ones
buying and eating it, we know what we
want, what would work...not just me, but all
of us, why don’t they ask us ?’ ‘Even if we disagreed, we would surely find a
consensus, and at least people would know
that everyone had been involved in making
that decision .
‘You would have to understand it … how they developed it ,
what’s the evidence behind it. We’re not stupid, we will get it ... if
it’s communicated properly’
Roisin, Age 17., Ireland
Jake, Parent of Aine, 9
years. Ireland
Jenny, Parent of
Sammy, Age 14, UK
Most popular/frequent suggestions from all age
groups, including parents
1. Maximum/minimum levels
2. Including ‘confidence’ levels
3. Link to eating out/restaurants
4. Bar code link (shopping/eating out)
5. Clinical interview
6. Agreed and consistent terminology
.........An ideal label???
• This product has been produced in a manufacturing
facility where the likelihood of any product containing
any peanut is <5%. The maximum detected amount of
peanut has been Xmg/serving. This amount is known
to be safe for 95% of peanut allergic consumers and
to date it has not been shown to cause a severe
allergic reaction in allergist supervised tests.
• Hourihane (EAACI Milan, 2013)
Today your child has tolerated a food challenge to a very low trace
dose of peanut.
What does this mean?
This suggests that if your child eats a food product which contains
precautionary labelling (e.g. ‘may contain traces of nuts’ statements) in
the future, he/she is at extremely low, but not zero, risk of having an
allergic reaction.
As usual, any packaged good can be accidentally contaminated with
larger amounts of peanut protein, and hence an unpredictable allergic
reaction to such foods can occur.
Today your child has tolerated a food challenge to a very low trace dose of
peanut.
What are our recommendations?
We recommend ongoing care and caution. However, for most children with
peanut allergy, parents may now decide that their child can start (or continue)
eating foods which such contain precautionary labelling. If such foods are
consumed, a reaction is still possible, but exceedingly unlikely to occur.
For some children, including but not limited to those who have a
history of more severe anaphylaxis to peanut or unstable asthma,
this should be discussed with your allergy specialist and
a decision is made on a case-by-case basis.
K Allen
So, to conclude...
Uncertainty has a profound psychological
impact on children, teens, young people
and families growing up and living with
food allergy.
However, practical interventions can
reduce this uncertainty and improve
quality of life.
For example, through reducing uncertainty...
Routine oral food challenge improves Quality of Life
◦ DunnGalvin A, Cullinane C, Daly D A, Flokstra-de Blok B M J, Dubois A E J, Hourihane J O'B (2010). Longitudinal validity and responsiveness of the Food Allergy Quality of Life Questionnaire - Parent Form in children 0-12 years following positive and negative food challenges. Clinical & Experimental Allergy; 40(3):476-85.
Good communication and clinical support improves Quality of life and
confidence in decision making and management
◦ Kelleher MM, Hourihane JO’B, Dunngalvin A, Cullinane C, Fitzsimons J, Sheikh A (2012). A 24-h helpline for access to expert management advice for food allergy-related anaphylaxis in children: protocol for a pragmatic randomised controlled trial. BMJ 2(4).
Learning to cope constructively with food allergy improves perception
of control and Quality of life
◦ ‘Food Allergy Matters’ : Evidence-based efficacy of an intervention developed to moderate the psychological impact of food allergy, using a controlled design. DunnGalvin & Hourihane (submitted).
The validation of population thresholds
can decrease the uncertainty of living with
food allergy.
Acceptability ?
• The acceptability of thresholds can be increased through the
implementation of certain linked strategies,
clearer, trustworthy,and consistent labelling,
increased understanding and awareness about thresholds,
a stronger link between individual and population thresholds
• leading to FA consumers accepting a perceived ‘higher level of risk’ if
they are able to feel more in control of their lives and their allergy.
Core theme ..?
Thresholds Acceptability
Thresholds Acceptability
Joint Endeavour/Communication
Core theme ..?
‘If the whole process is communicated
clearly– then quality of life would be so
much improved for allergic consumers’
‘Life is long. I hope my child lives longer as
a adult than a child. If there were a safe
min level on shared equipment, it would
open up a universe of food for her. ‘
Allergist, US
Parent, US
acknowledgements
Jonathan O’B.Hourihane, University College Cork
Europrevall Birth Cohort Group (Italy, Netherlands, UK, Iceland, Spain, Germany)
Aziz Sheik & Allison Worth, University of Edinburgh
Hazel Gowland. AllergyAction, UK
Anaphylaxis Ireland.
Steve Taylor, Joe Baumert, FARRP, University of Nebraska
Antonella Muraro & Laura Polloni ,Padua University.
Jennifer LeBovidge, Harvard Children’s Hospital, Harvard University, US
Wesley Burks, Duke University
Katie Allen, Nadine Bertelli, Royal Children’s Hospital, Melbourne, Australia
Wen Chin, Women & Children’s Hospital, Singapore
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