Global availability and uptake of psychological services for adults, caregivers and children with food allergy

Background: Food allergy (FA) is associated with poor health-related quality of life and high levels of psychological distress. Psychological support is extremely important but not always available. As part of the Global Access to Psychological Services for Food Allergy (GAPS) study, we aimed to assess psychological distress and service use among adults, caregivers and children with FA in a global survey. Methods: Participants ( n = 1329 adults with FA; n = 1907 caregivers of children with FA) from >


| INTRODUC TI ON
2][3] Up to 10% of adults also have the condition, with some evidence suggesting an increase in the numbers of patients diagnosed with FA in adulthood. 4,5Most research to date has focused on the impact of FA on children and their parents, with poor health-related quality of life (HRQoL) 6,7 and poor mental health being consistently reported. 8,9A systematic review identified FA-specific anxiety to be the most frequently endorsed form of FA-specific distress. 8Qualitative research has reported that parents feel they lack support from healthcare professionals (HCPs), have uncertainties regarding their child's FA management and experience anxiety, turmoil and isolation as they seek to integrate the FA into daily life. 10ere is much less research on the experiences of adults with FA; however, evidence suggests they are similarly affected.For example, in a survey of 153 adult patients in the United States with peanut allergy, almost a third reported that their FA substantially interfered with their life, with all observed domains of HRQoL significantly worse than population norms. 11Mental health may also be affected in adults, with a recent survey of university students reporting those with a FA had higher levels of anxiety and depression than those without FA. 12Significant associations have also been observed between poor HRQoL in adults and clinical characteristics such as a history of severe reaction, 13,14 being allergic to multiple foods, 14,15 being female 13,15 and allergen type. 13,14[18] Given the challenges of managing FA, its noted impact on HRQ oL and the overall mental health burden it imposes, [6][7][8]11 access to FArelated mental health resources and professionals equipped with FA expertise may be crucial to supporting patients and caregivers.
However, recent research conducted by our team regarding access to mental health care among Food Allergy Research & Education's (FARE) Centers of Excellence in the United States indicated that there are few mental health professionals to whom allergists can refer patients, even among sites recognised as providing exemplar clinical FA care. 19Similar unmet needs have been recognised in the United Kingdom, with very few allergy clinics having access to specialist psychologists to support their patients. 20e Global Access to Psychological Services for Food Allergy study (GAPS) was established to characterise FA-specific psychological needs and access to care globally in order to inform health care leaders about the psychosocial needs of the FA population and their families, and encourage educated decisions about resource

| Design
This study used a cross-sectional online survey design.The study received ethical approval from Aston University Research Ethics Committee (REC ID number 1621) and all participants provided informed consent.

| Measures
Current validated scales of HRQoL and anxiety were determined to be too narrow to assess the range of psychological distress under investigation in this study and no scales exist to measure access to and experience of mental health services.Therefore, a questionnaire developed by members of our team's prior study on mental health provider access in the United States 19 was adapted by the study team.
The revised questionnaire was based on a review of the current literature, the aims of the GAPS study and iterative input from the full research team which includes psychologists, allergists, methodologists, primary care physicians, health services researchers, patients and patient organisation representatives.The questionnaire was translated into further languages: French (European and Canadian), German, Italian, Portuguese (European and Brazilian) and Spanish, by a professional translation company.It was then piloted with native speakers of each language from across our network, who checked the translations and provided feedback on any inaccuracies.Questionnaires were then successfully back translated to confirm accuracy.
Questionnaires assessed adult, caregiver and child sociodemographic characteristics, FA characteristics, FA-related psychological distress, screening for FA-related psychological distress at allergy appointments, FA-related mental health appointments, and barriers to seek mental health care for FA.Skip logic was used within the survey so that participants only answered questions relevant for them.Recruitment methods aimed to reach as many countries as possible, however specific advertising was focused on Australia, Brazil, Canada, France, Germany, Italy, Portugal, Spain, the United Kingdom and the United States.A link in the study advertisement took participants to a participant information sheet, a consent form and the survey, hosted on the Qualtrics online platform.All participants had to answer eligibility questions regarding the diagnosis of their FA and age and had to complete the consent form before being allowed access to the survey.Surveys were completed anonymously.

| Data analysis
Data were downloaded from the Qualtrics server into SPSS Version 28.Descriptive data on need for and use of psychological services are reported across the whole sample, split by adults and caregivers.
Where there were sufficient participants, cross country-comparisons were conducted using chi-square analyses for categorical data.

| RE SULTS
A total of 1329 adults and 1907 caregivers participated.Over 20 countries were represented; however, participants mostly came from Australia, Brazil, Canada, France, Germany, Italy, Portugal, Spain, the United Kingdom and the United States.The range of participants from these countries was 90 to 208 adults and 117 to 659 caregivers.Most adults identified as White (85.4%), over two-thirds were women (70.2%) and just under half were married (42.7%).
Mean age was 38.14 ± 13.4 years.The most commonly reported allergy was to peanut (36.1%), followed by tree nut (30.6%) and cow's milk (26.9%).Half of the adult participants (49.1%) had a prescription for an adrenaline auto-injector (AAI), and half (50.1%) had a history of anaphylaxis.
Most caregivers also identified as White (79.2%);80.9% reported they were the mother of a child with FA and were married (71.8%).Mean (SD) child age was 8.60 ± 4.66 years and over just half of children were male (60.6%,N = 1157).Caregivers reported that mean (SD) child age at time of FA diagnosis was 4.31 ± 3.68 years.Two-thirds of children (69.5%) had a prescription for an AAI, and half (47.9%) had a history of anaphylaxis according to the caregiver.Participant characteristics can be seen in Tables 1 and 2.

| Food allergy-related psychological distress
Just over two thirds of adults (67.7%, n = 900) and three-quarters of caregivers (77.2%, n = 1473) reported experiencing psychological distress related to their or their child's FA.The distress reported by most participants was anxiety about an allergic reaction (64.1% of adults; 74.4% of caregivers).For adults, this was closely followed by anxiety about living with their FA (62.5%).Over half felt sadness about the impact of FA on their lives (54.1%) and just over one-third of adults were worried about bullying related to their FA (35.2%).
Caregivers reported fear of trusting others with care of their child (71.0%).Over half of caregivers reported worry that people do not understand the seriousness of their child's FA even though the caregiver tried to explain it to them (59.7%)and, similar to adults, sadness about the impact of FA on life (55.6%)was also commonly reported.
Approximately half of caregivers (51.6%) reported that their child had experienced psychological distress related to FA.The most commonly reported types of distress experienced by children were sadness about the impact of FA on life (57.4%)and anxiety about having an allergic reaction (56.4%).A complete list of reported types of FA-related distress is provided in Tables 3 and 4 Cross-country comparisons were made for 10 countries where there were sufficient sample sizes (see Tables 5 and 6).There were significant associations between FA-related distress and country of residence for adults (χ and Australia (78.6%) reporting FA-related distress were significantly greater than proportions of adults from countries such as Germany (55.8%) and France (44.9%) (see Table 4).Similarly, proportions of caregivers from Brazil (97.3%),Australia (96.6%), and the United Kingdom (85.6%) reporting their own FA-related psychological distress were higher than other countries.In comparison, proportions of caregivers in Germany (60.6%), France (54.6%) and Spain (50.3%) reporting their own FA-related psychological distress were lower (Table 5).Proportions of caregivers in Australia (72.0%) and the United Kingdom (70.9%) reporting FA-related psychological distress in their child were higher than other countries.In contrast, proportions in Spain (35.1%) and Portugal (42.4%) were lower (Table 6).

| Screening for food allergy-related distress
Only one fifth of adults (19.4%, n = 258) had been screened or assessed for FA-related psychological distress during a FA appointment.Similarly, very few caregivers reported that they (13.9%)or their child (15.8%) had been screened or assessed for FA-related psychological distress during a FA appointment (Tables 5 and 6).
There was significant cross-country variability for patientreported screening of FA-related distress for adults (χ and just over a third of those from Germany (34.5%) (Table 5).For caregivers in Australia (0.8%), Brazil (8.0%) and the United States (8.5%), a smaller proportion were screened for FA-related distress compared to Germany, where over half of caregivers were screened (51.5%).Similarly, less than 10% of children were screened for FArelated distress in Australia (3.4%), Brazil (9.0%) and Canada (9.7%), whereas in Germany almost half of children were screened (40.7%) (Table 6).

| Mental health appointments and diagnosis
Similar to proportions reported for screening, 22.9% of all adults (n = 304) and 22.0% (n = 411) of caregivers reported they had visited a mental health professional for treatment for FA-related concerns.
For caregivers who had seen a mental health professional, 27.5% reported they visited a provider for themselves, 48.0% for their child, and 24.6% for both themselves and their child.

TA B L E 3
Psychological distress related to food allergy reported by adults (N = 1329).Again there were significant associations between proportions of those seeing a mental health professional for FA-related distress and country of residence for adults (χ 2 (9) = 42.30,p < .001)and caregivers (χ 2 (8) = .50.13, p < .001)(Tables 5 and 6).A minority of adults (10.6%, n = 141) said they had been diagnosed with a mental health disorder that was related to their FA, with significant associations across country of residence (χ 2 (9) = 32.70,p < .001).A larger proportion of adults in the United States (24.2%) reported a diagnosis compared to other countries, with Portugal reporting the lowest proportion (5.4%).(Table 5).Of the caregivers who reported on their and their child's mental health history, 29.3% reported they had been diagnosed with a mental health disorder and 12.6% reported their child had been diagnosed.6).

| Barriers to accessing mental health services
The most commonly reported barrier to seeking mental health services for those who had seen and those who had not seen a mental health professional was cost (33.0% of adults and caregivers who had seen a mental health professional, and 33% of adults and 25% of caregivers who had not) (Table 7).A lack of insurance coverage, doctors not providing a referral, practitioners not available, time constraints and childcare difficulties were other common barriers reported (Table 7).
Barriers were ranked based on the number of endorsements for each barrier by participants in each country.Cost was ranked as the biggest barrier in almost all countries by adults and caregivers.
Fewer people endorsed a reluctance to seek mental health care due to potentially receiving a mental health label apart from the United Kingdom and Spain, where this was the most commonly endorsed barrier by those who had seen a mental health professional.The online data (Data S1) show barrier rankings by country for those who had or had not seen a mental health professional.

| DISCUSS ION
This is the first study to report on the global level of psychological distress experienced by adults, caregivers and children with FA.Two thirds of all adults and almost three-quarters of all caregivers in this large sample from over 20 countries reported FA-related psychological distress, but there was significant variability across countries.

TA B L E 4
Psychological distress related to food allergy reported by caregivers for them and their children (N = 1907).In most countries very few had been screened for FA-related psychological distress during a FA appointment.These new data highlight the scale of the unmet need for psychological support among patients with FA and their caregivers, which supports that already noted for children and caregivers in countries such as the United States 19 and the United Kingdom. 207][8][9] Over half of adults also reported sadness about the impact of FA on their lives, supporting previous findings on a sample of undergraduate students in the United States. 12Adults in this study also reported anxiety and worry over procedural aspects of their FA such as carrying and administering an AAI or having an oral food challenge.Assessment of adults for FA-related distress and referral to appropriate support should therefore not be overlooked.Over a third also reported worry about FA-related bullying.This has been reported in children [21][22][23]   but it could be in the workplace or from peers and so requires further investigation.
7][8][9] The mean age of diagnosis for children in this study was over 4, which may indicate delayed access to care and medical support, which may contribute to distress.
Caregivers' perceptions about their child's FA psychosocial distress are aligned with previous research about the impact of FA on children's QoL and mental health, with anxiety about allergic reactions and sadness about the impact on FA being prominent. 24However, findings to date have been mainly from North America and a small number of countries in Europe.This study is the first to show that the impact of FA and the type of distress felt by families is not confined to these countries but is felt globally.
A strength of this study is the sample sizes achieved, making it possible to explore cross-country differences in the level of distress reported and the level of assessment and uptake of mental health services.There was significant variability in reported distress across and access to support that is experienced by more underserved populations.We were also only able to reach those who had internet access and saw adverts from patient organisations or were part of a survey panel.Although this methodology was the most appropriate to reach a large sample from a spread of countries, the results may not be applicable to those who do not have internet access to complete an online survey.The study was advertised as wanting to explore psychological service needs of those affected by FA and so respondents who had psychological distress related to FA may have been more likely to respond.However, significant cross-country differences in levels of distress reported demonstrate that this is not uniform across the whole sample.Additionally, the quantitative nature of the survey limits our ability to provide explanations as to why we have cross-country differences.In order to explore this, the GAPS study is currently undertaking in-depth interviews with adults and caregivers across nine countries and is planning a follow-up survey to explore these issues further.An online intervention toolkit guided by our findings to offer psychological support for caregivers is also planned.

| CON CLUS ION
FA-related distress appears widespread among adults, children and caregivers.However, this psychosocial burden may be underappreciated and largely unrecognised due to a lack of clinical screening and linkage to appropriately trained mental health professionals.
Clinicians should be aware that FA-related distress is not confined to children or adolescents and their caregivers and are encouraged to ask their adult patients about their worries so that targeted support or referral can be made where possible.Routine screening for psychological distress for patients of any age and caregivers would be optimal, particularly for anxieties about an allergic reaction, using an AAI, or having an oral food challenge.Adults also reported sadness about their FA and therefore low mood or depression should be assessed.The impact on other areas of adult life should also be part of a clinical consultation, particularly concerns regarding bullying, which might not be routinely discussed.Validated psychosocial measures of anxiety, depression and QoL could be utilised and should be FA-specific where possible and information and education delivered at the most appropriate times tailored to age could be helpful in reducing anxieties.Patients or caregivers who report high levels of psychological distress should be referred to, or connected with, a mental health professional where available and to mental health resources or sources of support such as the relevant patient organisation.Due to the barriers to support identified by this study, low-cost or free and accessible psychological support is needed.Further analysis of the current data is planned in order to explore differences in distress other than country of residence, based on clinical characteristics of allergy in our participant groups.
The next phase of the GAPS study is to develop an online intervention, guided by our findings, to offer psychological support for adults and caregivers.

G
R A P H I C A L A B S T R A C T Food allergy-related distress reported by adults and caregivers across countries.Abbreviations: AAI, adrenaline auto-injector; FA, food allergy; FARE, Food Allergy Research & Education; GAPS, Global Access to Psychological Services; HCPs, healthcare Professionals; HRQoL, health-related Quality of life; IgE, immunoglobulin E. allocation.The first phase of this project aimed to assess the psychological healthcare needs of patients with FA and caregivers of children with FA, and the availability and uptake of psychological resources via on online survey.This article reports on the results of a large international sample of adults with FA and caregivers of children with FA.The main aim of this article was to determine the rates of psychological distress and support needs across different countries, to inform what efforts are necessary to support patients.
Adults aged 18 years or over and caregivers (ages 18+ years) of children (aged 0-17 years) who self-reported a FA diagnosed by a HCP were eligible to participate.Participants were recruited via advertisements shared by patient organisations via their websites, newsletters, emails, and social media and advertisements posted on social media by the study team.Advertisements asked for participation in a study looking at psychological service needs for people with FA.An online survey panel, supplied by Qualtrics, was also used for recruitment.Additionally, the caregiver questionnaire was distributed as an optional survey to participants in the Food Allergy Outcomes Related to White and African American Racial Differences (FORWARD) Study, a prospective, multicentre cohort study investigating clinical and psychosocial FA factors in a socioeconomically, racially, and ethnically diverse sample of children with allergist-diagnosed FA and their caregivers in the United States.

TA B L E 1
Characteristics of the survey participants (adults N = 1329; caregivers N = 1907).

related distress Screened for FA- related distress Seen a mental health professional for FA-related distress Diagnosed with a FA-related mental health disorder
Number (%) of caregivers reporting psychological distress, screening for psychological distress, and diagnosis of mental health disorders related to food allergy across countries.
and is often associated with bullying at school, but has not previously been shown in adults.It is not clear what the source of bullying might be TA B L E 5 Number (%) of adults reporting psychological distress, screening and diagnosis of mental health disorders related to FA across countries.Country FA-

%) Had seen a mental health professional (N = 304) Had not seen a mental health professional (N = 997) Had seen a mental health professional (N = 411) Had not seen a mental health professional (N = 1475)
with FA expertise in collaboration with FA patient organisations, and a rigorous translation process with native speakers that enabled participants to complete the survey in different languages.However, there are some limitations to consider.Despite the global reach of this study, the sample is still predominantly White and over two TA B L E 7 Barriers to seeking mental health treatment for food allergy-related concerns.BarrierAdults N (%) Caregivers N (thirds female.Further, it is unclear if the demographic profiles of respondents within each country are representative of the country overall.More work is needed to understand the levels of distress