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Life with a food allergy:

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Life with a food allergy: The impact of food allergy on quality of life, stress and anxiety Dr Rebecca Knibb Centre for Psychological Research University of Derby – PowerPoint PPT presentation

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Title: Life with a food allergy:


1
Life with a food allergy The impact of food
allergy on quality of life, stress and anxiety
Dr Rebecca Knibb Centre for Psychological
Research University of Derby
2
Death from food allergy is relatively
rare Pumphrey Gowland (2007) reported 48
deaths from 1999-2006 that could be attributed to
food the majority were in the 11-30yr age
bracket and had occurred outside the family
home However, the impact of food allergy on
quality of life and psychological distress in
both sufferers and their family is profound
3
Impact on Quality of Life
A recent review of the literature on the impact
of QoL on food allergy found just 15 studies had
examined this important issue (Marklund et al.,
2007) only 8 of these had solely examined QoL in
food allergy They concluded that food allergy
had a significant impact on QoL of children and
their parents, adolescents and adults. Areas
affected in particular were family and social
activities, emotional factors and family
economy QoL was also more affected when the
sufferer had concomitant atopic illness or had
more than one food allergy
4
Primeau et al., 2000 (Canada) Aim Investigate
QoL in children and adults with peanut allergy
using parental ratings compared to parental
ratings of children with rheumatological
disease Methods Asked 153 parents to rate QoL of
their child with peanut allergy using the Impact
on Family Questionnaire Asked 37 adults with
peanut allergy to rate their own QoL Compared
them to 69 parental ratings of children with
rheumatological disease or 42 adults with the
disease
5
Results Parents of children with peanut allergy
reported that their children had 1. More
disruption to daily activities 2. More
disruption in normal social family interaction as
a direct consequence of the illness Compared to
children with rheumatological disease Reverse
was true for adults
6
Sicherer et al, 2001 (USA) Aim Assess parental
perceptions of QoL in children with food
allergy Methods Assessed parental perceptions of
physical and social functioning in 253 children
and adolescents (aged 5-18) with food allergies
using CHQ-PF50 Compared with a normal population
control group
7
Results Families scored significantly lower for
general health perception They had greater
distress and worry for their childs
condition Felt there were greater limitations
and interruptions to family life Than the norm
group scores
8
Bollinger et al., 2006 Aim Investigate impact of
food allergy on daily activities of food allergic
children and their families Methods 101
care-givers were given a study-specific Qu and a
Food Allergy Impact Scale Results More than half
the care-givers reported impact on meal
preparation, social activities such as parties
and sleepovers
9
(No Transcript)
10
Avery et al., 2003 (U.K.) Aim Assess QoL of
children with peanut allergy from the childs
perspective Methods 20 children with peanut
allergy were compared with 20 diabetic
children Disease-specific QoL questionnaires
were used Childen took photographs of things that
represented their QoL (Photovoice)
11
Results Children with food allergies reported an
overall poorer QoL than children with
IDDM Children with food allergies reported
greater anxiety about eating, especially away
from home Children with food allergies took more
food-related photographs, especially restaurant
related photos
12
Valentine Knibb, 2004 (U.K.) Aim Assess QoL in
children with food allergies and their primary
care-giver Methods Validated generic QoL
measures used (WHOQOL-BREF PEDS-QL) Children
and carer took photos and filled in a diary over
a one week period Compared with healthy children
Valentine Knibb, paper in prep for Ped Allergy
Immunol
13
Results Parents of children with food allergies
had significantly lower QoL in their social
relationships and lower overall QoL Children
with food allergies scored lower on social and
emotional QoL Photo analysis showed that food
allergy particularly influenced domains of
education, food/drink, health and places
14
Semper Knibb, 2004 (U.K.) Aim Assess QoL of
parents of children with food allergy Methods 157
parents with food allergic children completed
questionnaires measuring QoL (COMQOL-A5 Family
Impact Scale)
15
Results Parents rated their subjective quality of
life as significantly less impaired than
indicated by an objective measure of quality of
life (plt.001) Scores on the FIS illustrated that
there was a significant impact on personal
strain, familial, social financial aspects
of their family life as numbers of food types
their children were allergic to increased (pgt.001)
16
King, Knibb Hourihane (2008)
  • Investigated the burden of peanut allergy on
    families including father older sibling
  • 46 families were recruited from the Childrens
    Allergy Clinic, Southampton General Hospital (UK)
  • Inclusion criteria
  • Child with peanut allergy aged 8 to 12 years
  • Older sibling (15 years and under) no history of
    food allergy or intolerance living in family home
  • Parents no personal history of food allergy or
    intolerance
  • Children parents given age-specific information
    sheets, consent forms questionnaires to fill in
    at home

King, Knibb Hourihane, Allergy, in press
17
Inter-Relationships Investigated
Mother
Father
Child with Peanut Allergy
Older Sibling
18
Measures
MOTHERS FATHERS OLDER SIBLING CHILD WITH PEANUT ALLERGY
Avery Scale (proxy for child with PA) Avery Scale (proxy for child with PA) Avery Scale
PSS Spence Anxiety Scale Spence Anxiety Scale
WHOQoL-BREF PedsQLTM 4.0 PedsQLTM 4.0
PedsQLTM 4.0 (proxy for child with PA) PedsQLTM 4.0 (proxy for child with PA)
STAI
19
Results
  • Parental differences
  • Mothers rated own psychological QoL (t(90)3.16,
    p0.002) and physical QoL (t(90)2.08, p0.04)
    significantly worse than fathers
  • Mothers scored higher than fathers on
  • trait anxiety (t(88)-3.33, p0.001)
  • state anxiety (t(89)-2.13, p0.04)
  • stress (t(89)-4.23, plt0.001)

20
Parental Scores Scale scores for stress (PSS)
state anxiety (STAI1), trait anxiety (STAI2), and
physical and psychological QoL (WHOQoL-BREF) for
mothers and fathers
21
Sibling Differences
  • Children with PA had lower ratings than siblings
    for
  • health related quality of life (t(75.9)-2.31,
    p0.02)
  • quality of life within school (t(87)-2.64,
    p0.01)
  • total quality of life (t(87)2.02, p0.05)
  • They rated separation anxiety as significantly
    higher than their siblings t(85)2.39, p0.02

22
Gender Differences - Anxiety
  • No differences in anxiety ratings between boys
    with peanut allergy and male siblings
  • Girls with peanut allergy were more anxious than
    female siblings for
  • Separation anxiety, t(39)2.35, p0.02
  • Anxiety over physical injury, t(39)2.10, plt0.05

23
Gender differences - QoL
  • Boys with peanut allergy only rated QoL in school
    as significantly worse than male siblings, t(45),
    -2.05, plt0.05
  • Girls with peanut allergy rated QoL in school,
    t(40), -1.96, p0.0, health related QoL, t(40),
    -2.36, p0.02 and total QoL as worse than female
    siblings, t(45), -2.09, plt0.05

24
Proxy Ratings
  • Mothers rated food specific QoL of child
    with peanut allergy significantly worse than
    childs own ratings and proxy ratings of sibling
    father
  • (F(3,120)4.07, p0.009)

25
Proxy Ratings
  • Mothers fathers rated emotional QoL of
    their child with peanut allergy significantly
    worse than childs own ratings or proxy ratings
    of sibling
  • (F(3,123)4.07, p0.006)

26
Conclusion
  • Mothers show significantly poorer QoL, more
    anxiety stress than affected childs father or
    sibling burden of allergy
  • This inter-parental difference may be an
    important feature of family stress caused by
    peanut allergy
  • Our findings add to the growing literature
    supporting a gender difference in the parental
    impact of child chronic illness

27
Conclusion
  • Mothers rate QoL of child with peanut allergy
    lower than the child does
  • These differences call into question the findings
    of studies that have relied solely on proxy
    measures of the impact of peanut allergy on
    quality of life of children
  • Older siblings may have more realistic view of
    how child with PA views their QoL

28
Conclusion
  • Children with peanut allergy need to develop
    self-care behaviours and take more responsibility
    for their own allergy risk assessments as they
    grow up
  • Fostering these behaviours in younger children
    while counselling mothers regarding ways in which
    they could do this may help reduce anxiety levels

29
Much of the work on QoL examines clinic samples
or those that have already been diagnosed with
food allergy Little is known how suspected food
allergy impacts on the parents prior to diagnosis
in their child
30
Lack of specialist allergy services results in
difficulties in getting referrals and long
waiting times before parents can confirm whether
food allergy is causing symptoms in their
child They therefore have to cope with this
uncertainty and develop ways to manage suspected
food allergy in their child
31
Knibb Semper, 2008 (U.K.)
  • Aimed to assess anxiety and depression levels of
    parents before and after attendance at allergy
    clinic to have their child diagnosed for
    suspected food allergy
  • To investigate lifestyle and dietary changes
    before and after clinic attendance
  • To ascertain informational and general knowledge
    sources of food allergy for parents

Knibb Semper, paper in prep for Clin Exp Allergy
32
Methods
  • Participants 125 parents visiting one of two
    allergy clinics in the Midlands, U.K. to have
    their child assessed for food allergy
  • Materials
  • a study-specific questionnaire
  • Hospital Anxiety and Depression Scale
  • Questionnaires were completed at arrival at
    clinic prior to the consultation. A second
    questionnaire pack was sent to their home 3-4
    weeks later 51 parents responded to this.
  • The study received ethical approval from the
    relevant local NHS ethics committees.

33
Results
  • The majority (97) of participants were mothers
    of children with suspected food allergy
  • Mean referral time to the clinic from the G.P was
    3.2 months however some mothers had waited up to
    2 years before their GP would refer them to the
    clinic

34
Foods and symptoms reported by parents
Foods Symptoms
Peanuts 22.2 Diarrhoea 3.8
Other nuts 20.8 Vomiting 12.9
Fish 4.5 Eczema 10.1
Shellfish 4.5 Urticaria 21.3
Hens eggs 12.1 Asthma 6.3
Cows milk 10.1 Breathing problems 12.0
Wheat 3.0 Rhinitis 3.3
Fruit 3.0 Facial swelling 21.6
Additives 6.0 Behavioural/migraine 5.2
35
Changes prior to clinic attendance
  • 86.4 of parents reported an impact on their
    lifestyle prior to clinic attendance
  • 76 of parents had made changes to their childs
    diet prior to clinic attendance
  • 35.2 had made changes to their whole familys
    diet
  • Only 35 had been given advice about these
    changes
  • And only 50 of those who returned the 2nd
    questionnaire had a positive SPT

36
Lifestyle and dietary changes
Lifestyle changes Pre clinic Post clinic
Checking food labels 71.2 54.9
Difficulties eating out 22.4 21.6
Social activities problematic 18.4 9.8
Child has own meals at school 32.0 19.6
Taken time off work 27.2 11.8
Dietary changes Not asked
Remove food 67.2
Reduce food quantity 6.4
Use alternative food 16.8
Use nutritional supplements 4.8
37
Anxiety levels
There was no significant difference between
anxiety mean scores (t(42)-1.72, plt0.093) pre
and post clinic. After the clinic visit there
were less parents with normal anxiety levels, and
more parents with mild anxiety, but this did not
reach significance.
Anxiety Pre clinic () Post clinic ()
Normal 67.5 60.0
Mild 14.2 24.5
Moderate 15.0 13.3
Severe 3.3 2.2
Mean score (s.d.) 6.45 (2.55) 6.35 (3.85)
38
Depression levels
There was no significant difference between
depression mean scores (t(35)-1.40, plt0.17) pre
and post clinic. After the clinic visit there
were less parents with normal or mild depression
levels, and significantly more parents with
moderate depression levels, but this was not
significant with such low Ns.
Depression Pre clinic () Post clinic ()
Normal 82.5 86.9
Mild 16.5 10.5
Moderate 1.0 2.6
Severe 0 0
Mean score (s.d.) 3.25 (3.19) 3.18 (3.10)
39
Information and knowledge
A significantly greater proportion of general
knowledge came from non-medical sources compared
to medical sources both pre-clinic (c2(1)48.55,
plt0.001) and post-clinic (c2(1)57.85, plt0.001).
There was no difference for information sources.
Source Information General Knowledge General Knowledge
Pre clinic Post clinic
Medical 50.4 35.8 30.1
Media 32.1 43.4 49.1
Family/friends 13.9 17.6 17.6
Support groups 3.6 3.2 3.2
40
Discussion
  • Prior to diagnosis suspected food allergy does
    have an impact on the lives of the child and
    parents.
  • The majority of parents had removed foods from
    their childs diet, although only around a third
    had received advice about this.
  • Suspected food allergy also impacted on the
    lifestyle of the family, with parents checking
    food labels and finding difficulties eating in
    restaurants or taking their child to parties.

41
  • Anxiety and depression was found to be present in
    parents prior to diagnosis of food allergy in
    their child
  • These levels did not reduce in the short term
    after the clinic visit. Indeed the previous
    study (King et al., in press) indicated that
    anxiety levels remain higher in the longer term
    also
  • Ways in which we communicate allergy information
    prior to clinic, at clinic and after clinic
    attendance, should be investigated to see if we
    can reduce this distress

42
  • In addition, parents reported that they got their
    food allergy knowledge from non-medical sources
    such as the media, family and friends .
  • It is clear that accurate and easy to understand
    information about food allergy needs to be
    disseminated to the general public in order for
    parents to be able to make appropriately informed
    choices if they suspect their child has a food
    allergy.
  • Ways in which the impact on diet, lifestyle and
    psychological distress can be minimised prior to
    diagnosis of food allergy also need to be
    investigated.

43
Can coping reduce this distress?
  • Knibb Horton, 2008
  • Aim was to measure the extent to which illness
    perceptions and coping strategies are associated
    with levels of psychological distress in allergy
    sufferers
  • 156 allergy sufferers recruited from Allergy U.K.
  • 13 yrs with medically confirmed or self-reported
    allergy or food intolerance
  • mean age 44yrs 88 female 94 White
  • Measures
  • Revised Illness Perception Questionnaire (IPQ-R)
  • COPE Inventory
  • Perceived Stress Scale (PSS)
  • General Health Questionnaire (GHQ-28)

Knibb Horton (2008) British Journal of Health
Psychology
44
Summary of regression analyses
  • Illness representations explained between 6-26
    of the variance on measures of psychological
    distress
  • Coping strategies explained between 12-25
  • Variables associated with higher levels of
    distress
  • Strong illness identity assoc with somatic
    symptoms
  • Emotional representations of the allergy assoc
    with higher levels of social dysfunction,
    depression and stress
  • Less adaptive coping strategies such as focusing
    on and venting of emotions

45
  • Variables associated with lower levels of
    distress
  • Strong personal control beliefs assoc with less
    depression
  • Control over treatment assoc with fewer somatic
    symptoms
  • Adaptive coping strategies such as positive
    reinterpretation and growth assoc with less
    anxiety, insomnia and depression
  • Coping partially mediated the link between
    illness perceptions and outcome
  • Variables retaining an independent significant
    association with psychological distress
  • Strong illness identity with somatic symptoms
  • Strong emotional representations with severe
    depression
  • Less personal control with severe depression

46
Risk Taking in food allergy sufferers
Only 61 of 13-21 yr olds reported always
carrying their medication (Sampson et al.,
2006) may contain labelling or contains
allergen traces is frustrating Many adolescents
ignore it and eat the foods anyway (Gowland,
2001) Only 37 of parents always avoided foods
that may contain traces of the allergen (Semper
Knibb, 2008)
47
OVERALL CONCLUSIONS Life before diagnosis, at
diagnosis and during management of food allergy
needs to be examined when looking at how allergy
affects the child and adult sufferer Psychologica
l affects on the sufferer and the family are
varied and can be severe Further research using
validated scales are needed on non-clinic
populations
48
TARGETS FOR INTERVENTIONS Teach allergy
sufferers new coping strategies such as positive
reinterpretation of their allergy Reduce
emotional reactions to allergy and promote
beliefs in the effectiveness of both personal and
treatment control Improve methods of
communication of information for parents and
sufferers Improved education for sufferers,
carers, health care professionals Pumphrey
Gowland (2007) reported that over half those
dying had no professional advice and a small
number had misleading advice
49
Thank you and any questions..
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