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Quality of life in severe food allergy
Audrey DunnGalvin PhD Reg.Psychol.Ps.S.I.
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Living with severe food allergy
An intricate pattern of ‘facts’ and
‘feelings’ interwoven into a
child’s developmental pathway
from birth to adulthood, and
beyond.
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The Facts
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• Prevalence
• Hospital admission for anaphylaxis
• Case fatality rate of up to 1%, for medically coded food anaphylaxis, but varies
according to the definition used.
• Reliable identification of patients at increased risk of fatal food
anaphylaxis is not currently possible.
• Severity - majority symptom scores have been empirically created
whereas data-driven instruments are scarce.
Turner P.J., Campbell D.E. Epidemiology of severe anaphylaxis: can we use populationbased data to understand anaphylaxis? Curr Opin Allergy Clin Immunol. 2016;16:441–450
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‘Given the rarity of fatal food anaphylaxis, our
inability to reliably stratify risk, and the limited
evidence that specific interventions reduce fatality
risk—quality of life considerations should play a key
role in driving treatment decisions for people with
food allergy’.
Turner PJ, Jerschow E, Umasunthar T, Lin R, Campbell DE, Boyle RJ. Fatal Anaphylaxis: Mortality Rate and Risk
Factors. J Allergy Clin Immunol Pract. 2017;5(5):1169-1178. doi:10.1016/j.jaip.2017.06.031
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The Feelings
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In food allergy – the risk is ever present but the ‘when’, ‘what’, ‘why’, ‘how much’,
leads to uncertainty, fear, and anxiety.
Uncertainty
Difference
Psychological Impact of
Living with Severe Food
Allergy
Stress
Guilt
Anxiety
Patient
&
Caregiver
Sadness
Anger
Vigilance
Fear
Frustration
Confidence
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018.
55: 217.; Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
Uncertainty
Difference
Psychological Impact of
Living with Severe Food
Allergy
Stress
Guilt
Anxiety
Patient
&
Caregiver
Sadness
I remember his first reaction very
clearly..he was just six months
…I thought I was going to lose
him..you never get over that
Anger
feeling, ever….’ Parent, Ireland
Vigilance
Fear
Frustration
Confidence
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018.
55: 217.; Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
‘I need to kind of live my life on the risk
that something is going to happen
or something might never happen
Adolescent, UK
Psychological Impact of
Living with Severe Food
Allergy
Uncertainty
Difference
Stress
Guilt
Anxiety
Patient
&
Caregiver
Sadness
I remember his first reaction very
clearly..he was just six months
…I thought I was going to lose
him..you never get over that
Anger
feeling, ever….’ Parent, Ireland
Vigilance
Fear
Frustration
Confidence
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018.
55: 217.; Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
Travel
Bullying
Social, Behavioural &
Environmental Impact of
Living with Severe Food
Allergy
Planning
School
Eating out
Patient
&
Caregiver
Work
Transition
Autoinjector
Awareness
Exclusion
Regulation
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018. 55: 217.;
Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
‘
’you get tired of always having to be so aware,
planning ahead …explaining to people,
Bullying
and then you get a reaction anyway
because the chef doesn’t know about cross
& contamination’ Adolescent, UK
Social, Behavioural
Environmental Impact of
Living with Severe Food
Allergy
Travel
Planning
School
Eating out
Patient
&
Caregiver
Work
Transition
Autoinjector
Awareness
Exclusion
Regulation
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018. 55: 217.;
Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
‘
’you get tired of always having to be so aware,
planning ahead …explaining to people,
Bullying
and then you get a reaction anyway
because the chef doesn’t know about cross
& contamination’ Adolescent, UK
Social, Behavioural
Environmental Impact of
Living with Severe Food
Allergy
Travel
Planning
School
Eating out
‘
‘I worry about when I should
use [EAI], if I will be able
to do it ok..and even if it
Transition
will work’ Adolescent, US
Patient
&
Caregiver
Work
Autoinjector
Awareness
Exclusion
Regulation
Polloni L, DunnGalvin A. Muraro A. Allergy 2017; 72:1054–1060.; Dunn Galvin, A. & Hourihane, J. Clinic Rev Allerg Immunol 2018. 55: 217.;
Flokstra-de Blok BMJ et al. Allergy. 2010;65:238–44; Polloni L, et al. J Health Psychol. 2015
Measuring the Impact of Severe Food
Allergy on Food Allergy Quality of Life
(FAQL)
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• The Food Allergy Quality of Life Questionnaires (FAQLQ) are recommended as gold
standard by EAACI.
• Multi-dimensional items + demographics, symptoms, reaction history, diagnosis,
prescription and use of an auto-injector.
• The Food Allergy Independent Measure (FAIM) - perception of severity/chance of
adverse outcome.
• Used in general and treatment settings, cross-sectionally and longitudinally.
• A minimal clinical important difference (MCID) score of 0.45/0.5.
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How is severity defined in FAQL ?
• Severe food allergy is typically defined as having a
prescription for an EAI, or self-reported previous episodes of
anaphylaxis (i.e. the symptoms “difficulty breathing”, “inability
to stand”, collapse and/or loss of consciousness).
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FAQL and Severity
More adverse impact on FAQLQ:
• Perceived severity (sensitivity, likelihood of severe reaction) & number
of foods avoided.
• Objective severity (history of anaphylaxis, number of symptoms
experienced during a reaction)
• Co-morbidity/poly-allergy +
• Increasing Age (up to 18 years) & Female Gender
• Caregivers classified as food insecure (FIS)
Van der Velde 2012, DunnGalvin 2010; 2016; 2018, 2020; Goosens 2011, Tackett 2018 Warren 2015, Dantzer, 2018,
Flokstra-deBlok 2010, 2012, 2015, Warren 2015, Gupta 2008, Acaster 2020
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FAQL, Age, &
Severity
Challenges in growing up &
living with food allergy
Normal challenges in the
developmental pathway
Children (≤ 12 years)
• All domains significantly correlated with child self-reported
severity, life-threatening events, and number of reactions.
Adolescents (12-18 years),
• Perceived likelihood of accidental and severe reactions (FAIM)
associated with self-reported (but not always objective) severity.
Adults (19 years +)
• Emotional Impact and Risk of Exposure domains strongest
associations with self-reported severity
Van der Velde 2012, DunnGalvin 2010; 2016; 2018, 2020; Goosens 2011, Tackett 2018 Warren 2015, Dantzer, 2018,
Flokstra-deBlok 2010, 2012, 2015, Warren 2015, Gupta 2008, Acaster 2020
DunnGalvin et al., JACI -P 2018
DunnGalvin et al., JACI -P 2018
Higher relative
increases for
Food Anxiety
Domain
DunnGalvin et al., JACI -P 2018
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Correlates : FAQL & Severity
• Associated with caregiver anxiety, caregiver confidence, parent reported
severity
• Being ‘made to feel different’, teasing and bullying.
• Lower FA ‘self-efficacy’ (SEFAQ) & confidence in self-management
• Anxiety, Depression, relational difficulties (generic measures).
DunnGalvin et al., 2020; Khaleva et al., 2020
Severe Food Allergy & Mental Health/ Anxiety
UK population Norms for Generalised Anxiety Disorder vs
Caregivers of FA Child
80
70
60
50
40
30
20
10
0
UK population
Caregiver
Normal
Acaster et al., 2020
Mild
Modrate/Severe
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Severe Food Allergy & Mental Health/ Anxiety
UK population Norms for Generalised Anxiety Disorder vs
Caregivers of FA Child
80
70
60
50
40
30
20
10
0
UK population
Caregiver
Normal
Acaster et al., 2020
Mild
Modrate/Severe
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Severe Food Allergy & Mental Health/ Anxiety
Strength of relationship (R) between general anxiety in
Caregivers and FAQL in children & teens
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6
5
7
4
3
2
1
0
5
4
<6 years
DunnGalvin et al., 2019
R
6-12 years
>13 years
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Where next for FAQL in the context of
severe food allergy ?
Fixed
factors
Individual
Demographics
Socio-economics
Age
Sex/gender
Culture
Language
Disease
Comorbidity
Severity
Treatment
System
Health policy
Patient
Activation
Levels of
care
Time
Care
pathways
Transition
Longitudinal
tracking
Patient-physician interaction
Knowledge/training
Transition preparation & skills
Quality of communication/partnership
External
Modifiable
factors
Internal
Social/environmental
Social Network
Social Support (emotional,
instrumental, informational, appraisal)
Past experiences
Behavioural
Coping skills
Coping style
Psychological
Health beliefs (incl. symptoms
perception)
Level of anxiety/ fear/ depression
Normalisation
Personality Traits
Potential Correlates/
27 & Severe
Predictors of FAQL
Food Allergy
Outcomes
FA Quality of life
Selfefficacy
Self-management
Adherent/ Nonadherent Avoiding/
Not avoiding
triggers
Positive/ Poor
problem solving &
coping skills





Level of Confidence
Level of Symptom
control
Mental/Physical
health
Transition quality
Level of risk
New complementary measures
The Food Allergy Coping and Emotions Scale (FACES) (available for all age groups &
parents) will allow for quick and easy evaluation of coping and emotions for clinicians
and researchers
 Designed to be complementary to FAQLQ.
 Will help in developing patient self-management strategies and improving
outcomes.
Short Forms – The FAQLQ-10
New online platform
Researchers, clinicians, HCPs will be able to download the questionnaires, norms
data, advice on use and scoring, papers and reports, and news
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Gaps in research & practice
• Additional assessment tools needed (e.g., food allergy-specific anxiety;
immunotherapy experiences)
• Clinical concerns must be recognized (e.g., acute stress disorder/PTSD
related to anaphylaxis; feeding concerns/ARFID
• Insufficient number of mental health clinicians equipped to work with food
allergy families
• Multi-disciplinary/Integrated
Key points on FAQL & Severe Food Allergy
Research on FAQL has provided a patient-centred perspective and innovative findings with
applications for research, treatment & practice
The most significant FAQL impact is the persistent fear of an adverse reaction …and the
restrictions, vigilance, and planning that are necessary to minimize that chance.
Environmental factors also play an important (and dynamic) role
FAQLQ is now used globally which will allow for comparative
and longitudinal research, with benefits for patients and
families living with severe food allergy
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EAACI guideline on the effective
transition of adolescents and
young adults with allergy and
asthma
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Thank you for
listening !
Please address any
comments and questions
about the guideline to:
a.dunngalvin@ucc.ie