In 2019, safefood commissioned and funded research into the socioeconomic cost of food hypersensitivity on the island of Ireland. The research was conducted via online surveys, with over 4,000 respondents, and was carried out by Dr Ciara Walsh of the Technological University Dublin, and Dr Charlene McShane and Eimear O’Rourke of Queen’s University Belfast. They spoke with us about the findings of the report.
Food hypersensitivity is a broad term but for the purposes of this research, it referred to food allergy, food intolerance and coeliac disease. “The primary purpose of the research was to examine the socioeconomic costs associated with food hypersensitivity,” explains Ciara. “In addition, it was to collate data sets in Ireland and Northern Ireland, where possible. We collected a lot of data that was freely available from other studies, sources and institutions, to bring together a repository of public and private data. We contacted public institutions like schools, creches, and nursing homes to get a snapshot of what is happening in Ireland and Northern Ireland with regard to food allergies, coeliac disease and food intolerance, and how they manage these conditions.”
A food allergy is an adverse immunologic response to a food protein and is characterised by a range of symptoms ranging from mild irritation to life-threatening anaphylaxis.
Coeliac disease is a chronic inflammatory intestinal disease caused by an autoimmune response to gluten proteins.
A food intolerance is an unpleasant reaction to certain food ingredients, and difficulty digesting them.
Research has shown that having a food allergy is associated with increased costs for the affected individuals and their families. This includes direct and indirect financial costs, particularly those associated with healthcare and also intangible or ‘non-monetary’ costs due to the impact of food allergy on the individual’s overall health status, well-being, and quality of life. Very few of these cost studies considered other hypersensitivities such as coeliac disease, and none were found for food intolerance. No such studies have to date been carried out on the island of Ireland.
“Studies carried out on the socioeconomic costs of food allergy are typically calculated across many different countries/regions collectively, as opposed to independently for each country. This is the first study to examine the socioeconomic costs of food hypersensitivity on the island of Ireland, and these costs have been calculated independently for each food hypersensitivity for Ireland and Northern Ireland to more accurately reflect any possible differences in healthcare systems and governance,” Ciara adds. “Intangible (non-monetary) costs have also been looked at to examine the impact on quality of life.”
The research revealed that the impact of food hypersensitivity on quality of life was the most profound, with many day-to-day activities posing a huge challenge.
“Eating out is an integral part of our daily lives, from social events to children’s parties to school lunches to snacks,” explains Ciara. “The stress around these activities has an enormous impact on quality of life of individuals with food hypersensitivity. In particular, those who have a food allergy constantly have to be on guard for an inadvertent allergen contamination. Having previous trauma for anaphylaxis also heightens fear and anxiety associated with these activities, which in turn further impacts quality of life.”
The intangible data revealed significantly higher levels of pain and suffering, anxiety and depression associated with food hypersensitivity, in particular food allergy and food intolerance. However, individuals with all three food hypersensitivities were found to have significantly lower quality of life compared to people who don’t have food hypersensitivity, she says. The extent of the financial burden of having a food hypersensitivity was surprising, Ciara says, from the healthcare costs to specialist foods to lost earnings – it all adds up! “The driving force for the costs tended to be around ‘healthcare expenses’, but ‘food costs’ and ‘lost earning’ were often significant for the groups examined.”
Charlene continues: “A walk down the ‘free from’ aisle in the supermarket highlights the increased financial burden placed on individuals and families doing weekly shops as well as limited selection choice. This is before we factor in additional costs such as medication, time off work or school and costs related to healthcare appointments.”
It’s an area Eimear has first-hand experience of: “As an individual living with food hypersensitivities, I was not surprised by the research findings. When doing my food shop, I often notice that ‘free from’ food products (free from a particular allergen) are priced higher than non ‘free from’ food products. I must buy whole foods which have a shorter shelf life rather than pre-made convenience meals which may contain allergens, resulting in shopping more regularly with additional preparation time. Combined with the increase in food costs, we must consider medication and transport costs to healthcare appointments, hospital admissions and additional health-related arrangements.”
Eimear reaffirmed that it is the impact on quality of life that takes a greater toll on those living with food hypersensitivity: “It can limit activities outside of the home such as going out for dinner with friends,” Eimear explains. “Dining out is such an essential part of our social fabric that finding a way to do so is very challenging and time-consuming for individuals with food hypersensitivities. This can result in the individual feeling excluded from certain activities and experiencing higher levels of social isolation and anxiety.”
Timely access to medical specialists was highlighted by participants, with some citing difficulties accessing relevant specialities, for example, dietetic services and counselling/psychological support services. This situation was likely to have been further exacerbated by the pandemic, Charlene proposes, and the research emphasises the need for further resources to be put in place to support individuals living with food hypersensitivities.
Some of the findings were more positive than others, Ciara notes. “When we looked at educational settings in our priority setting interviews in Northern Ireland where they have school lunches, we had almost 70% positive feedback around how schools dealt with that child’s allergy. Respondents talked about separate meals and treats, having allergen action plans in place, teacher training and awareness, and knowledge of adrenaline auto-injectors (AAIs).”
This approach may be due to the guidance provided by the government. “The Department of Education in Northern Ireland has produced a comprehensive document forschools, containing guidance on policy creation and student management. In the Republic, we were unable to find such guidance and it’s one of the recommendations of the report that the Department of Education issue national guidance to schools.”
Another positive note was around improvements in allergen awareness and regulation when eating outside the home in recent years. However, there is still a lot more that could be done to educate the public and bridge knowledge gaps in this area. In fact, a ‘lack of public and food industry awareness’ was ranked as the number one priority for individuals with food hypersensitivity. This was noted as even more of a concern than ‘access to medical teams’ (the second highest priority).
The interviews highlighted other ideas such as the provision of potentially life-saving adrenaline auto-injectors in strategic public places, in a similar way to defibrillators. “We got very strong support for this. Approximately 90% of the people with food allergy interviewed agreed with this proposal, most of them felt very strongly that there should be auto-injector pens available in public, especially in childcare facilities and schools,” adds Ciara. It was recognised that this type of initiative would require education or an awareness programme.
There were several recommendations for the educational sphere, the primary one was increased allergen awareness and management, as well as consideration for the inclusion of AAIs in schools and childcare facilities. Other suggestions made by interviewees included allergy-free zones; a means of identifying a child with a food hypersensitivity, whether it’s picture with information, a tray or a lanyard; training of staff – teachers and catering staff; and a buddy system for a child or adolescent, as a means of psychological support.
The research revealed strong evidence to suggest that kiwi should be on the list of 14 food allergens, according to Ciara. “The World Health Organisation has recently put it on the food allergen watch list and the evidence in this report suggests that it is more prevalent and more associated with anaphylaxis than some of the allergens currently on the EU list.”
Data-driven policies and supports
The team would like to see the research inform the development of policy and provision of support measures aimed at improving the experience of people living with food hypersensitivities on the island of Ireland. “Through this research, we have developed a repository that can be used by other researchers, regulators, policy makers or anyone with an interest in this area to help or support people with food hypersensitivity,” Ciara states. She believes more work is needed around educational institutions and bodies to support children and adolescents due to the high psychological burden associated with food hypersensitivity.
Public and food industry awareness remains paramount, she continues. “We need the public to understand the potential severity of these conditions, as well as their potential impact on quality of life; and we need the food industry to make food allergen management a focal point of their training and food safety management systems.”
Find the full report on www.safefood.net/research
From top to bottom: Dr Ciara Walsh, Dr Charlene McShane, and Eimear O’Rourke