key: cord-0797470-doku2vr6
authors: Protudjer, J.L.P.; Golding, M.; Salisbury, M.R.; Abrams, E.M.; Roos, L.E.
title: High anxiety and health-related quality-of-life in families with children with food allergy during COVID-19
date: 2020-09-18
journal: Ann Allergy Asthma Immunol
DOI: 10.1016/j.anai.2020.09.010
sha: b413e7d4093039efc59a8ff0aa93889172e1c96c
doc_id: 797470
cord_uid: doku2vr6

BACKGROUND: Food allergy has a known impact on quality of life (QoL), but this has not been extensively studied during the COVID-19 pandemic. OBJECTIVE: The objective of this mixed methods study was to characterize the levels of anxiety of mothers of food allergic children aged 0-8 years, compared to families without a food allergic child, as well as health-related quality of life (HRQL) amongst food allergic children during the COVID-19 pandemic. METHODS: In a mixed methods study of Canadian mothers of children 0-8 years, food allergic cases and non-allergic controls provided demographic data, and completed age-appropriate anxiety questionnaires between 14-28 April 2020. Cases also provided food allergy-related data, and completed the Food Allergy Quality of Life Questionnaire (FAQLQ). In-depth interviews were subsequently conducted with purposefully-selected cases. RESULTS: Of N=580, 5.5% were cases and 94.5% were controls. For mothers with children 0-1.5 years, anxiety levels did not differ between cases and controls. For mothers with children 1.5-8 years, anxiety levels were higher in cases vs. controls (p<0.05). Amongst cases, neither overall nor domain-specific FAQLQ scores differed between age groups (0-3 vs. 4-7 years), even after adjustment for confounding variables, including childcare during the pandemic. Qualitatively, 3 themes were identified: Unexpected challenges of food shopping; Less food-related food anxiety during the pandemic; and Differences/delays in food allergy testing and therapy. CONCLUSION: Mothers with food allergic children reported high anxiety and poor HRQL. Yet, qualitatively, day-to-day food allergy management was better during the pandemic.

Background Food allergy has a known impact on quality of life (QoL), but this has not been extensively studied during the COVID-19 pandemic.

Objective The objective of this mixed methods study was to characterize the levels of anxiety of mothers of food allergic children aged 0-8 years, compared to families without a food allergic child, as well as health-related quality of life (HRQL) amongst food allergic children during the COVID-19 pandemic.

Methods In a mixed methods study of Canadian mothers of children 0-8 years, food allergic cases and non-allergic controls provided demographic data, and completed age-appropriate anxiety questionnaires between 14-28 April 2020. Cases also provided food allergy-related data, and completed the Food Allergy Quality of Life Questionnaire (FAQLQ). In-depth interviews were subsequently conducted with purposefully-selected cases.

Results Of N=580, 5.5% were cases and 94.5% were controls. For mothers with children 0-1.5 years, anxiety levels did not differ between cases and controls. For mothers with children 1.5-8 years, anxiety levels were higher in cases vs. controls (p<0.05). Amongst cases, neither overall nor domain-specific FAQLQ scores differed between age groups (0-3 vs. 4-7 years), even after adjustment for confounding variables, including childcare during the pandemic. Qualitatively, 3 themes were identified: Unexpected challenges of food shopping; Less food-related food anxiety during the pandemic; and Differences/delays in food allergy testing and therapy.

Conclusion Mothers with food allergic children reported high anxiety and poor HRQL. Yet, qualitatively, day-to-day food allergy management was better during the pandemic. 1 Food allergy affects approximately 6% of the pediatric population. 1 Both the food 2 allergic child 2,3 and their caregivers 4 report that their day-to-day quality of life is impacted. 3 Parents of children with food allergy have higher levels of anxiety and lower health-related 4 quality of life (HRQL) compared to families without a food allergic child. 3, 4 These differences 5 are largely attributed to difficult social interactions with other families and the stresses associated what their child eats. In turn, this may give rise to a sense of control that is not achievable when 13 the food allergic child eats out of home. 9 

Previous studies on food allergy have used a variety of anxiety and QoL tools 10-14 and 15 used in diverse populations. 2,15-19 16 We previously reported that the prevalence of depressive and anxiety symptoms amongst 17 mothers of children aged 0-8 years is high during the COVID-19 pandemic. 20 To our knowledge, 18 there are no previous reports of maternal anxiety and HRQL, with consideration to food allergy, 19 during the current pandemic. In addition, while caregiver anxiety related to childhood food 20 allergy has been well documented, few studies have done so qualitatively. The objective of this 21 mixed methods study was to characterize the levels of anxiety and the HRQL of families of food 22 J o u r n a l P r e -p r o o f allergic children aged 0-8 years, compared to families without a food allergic child during the 23 COVID-19 pandemic. 24 27 This mixed methods study followed a sequential explanatory design, in which 28 quantitative (survey) data were collected first, followed by qualitative (interview) data 29 collection. 21 Participants completed an online survey on parenting during the COVID-19 30 pandemic (parentingduringthepandemic.com), between April 14, 2020 and April 28, 2020. A 31 convenience sample of parents was recruited through online advertisements and social media 32 platforms, and indirectly through local media announcements and news broadcast appearances 33 by the senior author. Eligibility criteria were age ≥18 years; and, currently pregnant and/or had a 34 child(ren) aged 0-8 years. As nearly all (88.8%) participants were mothers, we restricted our 35 analyses to maternal data only. We further restricted our study population to mothers residing in 36 Canada at the time of the survey. Informed consent was obtained prior to online survey 37 completion. The survey took participants approximately 30-45 minutes to complete. 38 Participants were queried about family demographics including maternal age, age(s) of All families were directed to a question as to whether their child(ren) had allergies. In the 52 present analysis, families who reported no food allergy were categorized as controls, whereas 53 families reporting food allergy were categorized as cases. Cases were asked to complete the 54 FAQLQ-PF, 13 a reliable and valid food allergy-specific questionnaire, with which our group has 55 experience, 2, 5 and which is shown to be reliable over short time intervals. 13 As our study 56 population was restricted to parents of children ages 0-8 years, we excluded Section C (n=4 

Qualitative data were analyzed using thematic analysis, 24 a process that involved initial 79 identification of surface descriptive content, at which time we organized like-with-like ideas, 80 followed by identification of latent meaning. This two-stage analysis permitted the iterative 81 development of a coding guide, which we systematically applied and refined. Codes were then 82 categorized into larger themes. Constructs were considered to be theoretically saturated when 83 new or additional constructs ceased to be identified with subsequent interviews.

The mixing of the quantitative and qualitative data occurred at the interpretation stage. 25 

We compared both sets of data to identify contradicting or discrepant data. This study was 86 approved by the University of Manitoba Psychology/Sociology Research Ethics Board 87 (P2020:030 (HS23849)).

Of the 747 respondents to our survey, 580 (77.6%) met our inclusion criteria. This 91 constituted our study population, of which cases and controls constituted 5.5% (32/580) and 92 94.5% (548/580), respectively (Table 1) . Both cases and controls had, on average, families 93 composed of 2 adults and 2 children. Prior to the pandemic, center-based childcare was most 94 common for both cases (41.9%) and controls (46.5%), whereas the majority of cases (78.1%) and 95 controls (87.0%) were providing their own childcare during the pandemic. In this study, 27.6% 96 of cases and 31.0% of controls reporting an annual family income of over $140,000, although 97 few reported employment and income during the pandemic to be the same as pre-pandemic 98 levels.

Of the 32 cases, 26 provided information on the type of food allergies. Of these, milk was 100 the most common food allergen (6/26; 23.1%), followed by peanuts, tree nuts and egg, with 5/26 101 (19.2%) of each of these allergies reported ( Finally, we interviewed 4 mothers who reported that their child had food allergy in the 122 previously described survey and who consented to be contacted for follow-up studies ( Table 4) . 123 All mothers were married and reported that the working status of themselves and their partners on Health Canada's classification. 26 From these interviews, we identified three themes ( Table 5) . 127 First, families described unexpected challenges of food shopping during the pandemic, with 128 "stress" and "anxiety" as common descriptors. Mothers also commented on shortages of 129 ingredients that were needed to make alternatives to foods that may contain their child's allergen.

For instance, mothers reported having trouble finding common ingredients, like flour, yeast and 131 cocoa, which made it difficult to prepare allergen-free alternatives to packaged foods. Second, 132 families reported less food-related anxiety during the pandemic, as their children were always in 133 the care of one or both parents, which made "logistics easier." Finally, the two families with the 134 youngest children with food allergy spoke of differences and delays in food allergy testing or therapy. Virtual visits were perceived favourably, although one mother described how routine 136 testing was delayed until the clinic re-opened. Another mother explained how her child's peanut 137 immunotherapy (OIT) was similarly postponed due to the pandemic. One mother also stated how 138 she would not hesitate to present to the emergency department in the case of anaphylaxis, 139 regardless of pandemic-related concerns. The effects of an illness and its consequent therapy upon a patient, as perceived by the 176 patient (or, in the case of young children, the parent) 31 is captured in measures of HRQL. Food 177 allergy HRQL has been consistently reported as low in pre-pandemic studies. 2,3,5,32 with similarly 178 low findings identified in the present study. The three domains that comprise overall food allergy 179 HRQL, as measured by the FAQLQ, include emotional impacts such as lack of control and food 180 worry; food anxiety, including concerns about eating out or poor labelling on food products; and, 181 social and dietary limitations due to food allergy. 5 As the survey was administered when most non-essential businesses were closed due to COVID-19, it could be postulated that some items, 183 such as eating out or social limitations, included in these domains would be less relevant. The 184 inclusion of interview data in this mixed methods design contributed to an enhanced 185 understanding of HRQL findings.

The four mothers who were interviewed all spoke explicitly about being "lucky" or in 187 fortunate circumstances during the pandemic, as all remained working or were on maternity 188 leave during the pandemic and were financially stable. Nonetheless, they also described that they 189 were now preparing nearly all the meals and snacks for their families and felt stressed or rushed 190 when grocery shopping. They also struggled to find products, such as flour, that they routinely 191 used to make foods for their families to mitigate the risk of cross-contamination in pre-prepared 192 goods. Despite these challenges, the day-to-day management of food allergy was perceived as 193 being easier during the pandemic than normal times. These interviews were conducted 194 approximately 2 months after the start of the pandemic, and thus families may have had time to 195 adjust to life during the pandemic. In a previous study, mothers with allergic children sought to 196 "live an ordinary family life" 33 and that leaving their children in the care of others was 197 worrisome. 9 At the same time, food allergy management was described as being "overwhelming" 198 without support. 9 During a pandemic, when families are isolating at home, they are without the 199 external support, which creates a tenuous balance of worry and reprieve. presenting to an emergency department during the pandemic. 220 We acknowledge the limitations of our study, including a study population that was 221 restricted to mothers of children aged 0-8 years. As such, our results are not generalizable to 222 families with older children or teenagers, who are likely to be more aware of the impact of the 223 pandemic on their daily lives than younger children. The majority of our study population were 224 economically advantaged, with nearly one-third reporting household incomes >$140,000, which 225 limits the generalizability of our findings. We highlight other research on child health risks 226 during the pandemic highlights concerns of psychosocial distress and food insecurity for families 227 living in poverty, regardless of food allergy status (39) . In addition, sample sizes were small.

Yet, the proportion of children with food allergy in our study population (5.5%) was in keeping 229 with a recently reported prevalence estimate of food allergy in Canadian children (6.1%). 40 With 230 regard to qualitative work, the emphasis remains on the richness and depth of data, rather than 231 the volume or number of interviews performed. 24 

We highlight that, to our knowledge, this is the first mixed methods study on the 233 associations and perceptions of food allergy-related anxiety and HRQL during the COVID-19 234 pandemic. The mixed methods design contributed to a much richer and more profound 235 understanding than would have been possible with either quantitative or qualitative data alone.

Given the ubiquity and roles of food in all cultures, the inclusion of patients voices' in food 237 allergy research is increasingly recognized, 41 and is gaining ground in food allergy research. 30, 41 238 Findings from the present study may further inform stakeholder decisions as society J o u r n a l P r e -p r o o f Priority allergen* 8 100 Non-priority allergen † 0 0 *Milk, egg, peanut, tree nut, fish, crustaceans and molluscs, soy, wheat and triticale, sulphites, mustard, sesame †Foods other than those named above J o u r n a l P r e -p r o o f

Temporal trends in prevalence of food allergy in Canada

Health-related quality of life in children with objectively-diagnosed staple food allergy assessed with a disease-specific questionnaire

Health-related quality of life of food allergic patients: comparison with the general population and other diseases

Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Health-related quality of life worsens by school age amongst children with food allergy

Quality of life in childhood, adolescence and adult food allergy: Patient and parent perspectives

Parenting in a time of COVID-19

Food allergy: A review and update on epidemiology, pathogenesis, diagnosis, prevention, and management

Qualitative analysis of perceived impacts on childhood food allergy on caregiver mental health and lifestyle

Childhood allergies affect health-related quality of life

Health-related quality of life in food hypersensitive schoolchildren and their families: parents' perceptions

Comparing quality of life in Canadian children with peanut, sesame, and seafood allergy

Test-retest reliability of the Food Allergy Quality of Life Questionnaires (FAQLQ) for children, adolescents and adults

Development and validation of the self-administered Food Allergy Quality of Life Questionnaire for adolescents

Quality of life in food allergic children: Results from 174 quality-of-life patient questionnaires

Quality of life associated with maternal anxiety disorder in Russian children and adolecents with food allergy

Factors affecting food allergy-related quality of life from parents' perception in Turkish children

What affects quality of life among caregivers of food-allergic children?

Differences in empowerment and quality of life among parents of children with food allergy

Maternal psychological distress & mental health services use during the COVID-19 pandemic

Designing and conducting mixed methods research

The Perinatal Anxiety Screening Scale: development and preliminary validation

A brief measure for assessing generalized anxiety disorder: The GAD-7

Qualitative research and evaluation methods

Government of Canada. Common food allergens -priority allergens

American Psychological Association

Healthcare seems to vary a lot": A focus group study among parents of children with severe allergy

Perceived impacts of pediatric food allergy on parental mental health

Milk allergy most burdensome in multifood allergic children Pediatr Allergy Immunol

The impact of food allergy on quality of life

Predictors of health-related quality of life of European food-allergic patients

Living ordinary family life with an allergic childthe mother's perspective

COVID-19: Pandemic contingency planning for the Allergy and Immunology Clinic

A phased approach to resuming suspended allergy/immunology clinical services

Adult but no pediatric anaphylaxis-related deaths in the Finnish population from 1996 to 2013

Anaphylaxis -a 2020 practice paramter update, systemic review and Grading of Recommendations, Assessment, Development and Evaluation (GRADE)

Quality of life, stress, and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Effects of the global COVID-19 pandemic on early childhood development: short-and long-term risks and mitigating program and policy actions

Temporal trends in prevalence of food allergy in Canada

The need for patient voices in food allergy research

Oral food challenge implementation: the first mixed-methods study exploring barriers and solutions. JACI: In Pract

[Child] was supposed to start OIT, but that has been delayed due to the pandemic.The new guidelines for anaphylaxis make me nervous. I'd still give epi and go to the emergency room, even during a pandemic.