Patients with a food allergy have an impaired quality of life. This is mainly because they have to live with the fear of the sometimes severe allergic reactions that can be triggered by the consumption of a small quantity of an allergen. These patients also experience uncertainty about their diagnosis and prognosis, and must continuously consider which food or meals they can eat safely. Their quality of life may possibly be improved by increasing the knowledge about food allergies in people who are in immediate contact with them such as doctors, family, friends and teachers. This is what Nicole Goossens from the UMCG concludes in her PhD thesis. She conducted research into the health-related quality of life of patients with a food allergy and studied knowledge about food allergies in the Netherlands. Goossens will be awarded a PhD by the University of Groningen on 30 June.
A food allergy is a specific and immunologic defence mechanism of the body that springs into action when a certain food is consumed. The fact that these patients and their families must continuously be alert when preparing and eating food causes anxiety, uncertainty and thus a lower quality of life. There is no current treatment for food allergy. Patients must avoid allergens, and those with severe forms of food allergy must always carry an adrenaline pen that they can inject in case of emergency. It is the job of healthcare providers to focus on the quality of life of these patients.
Goossens studied quality of life in relation to food allergy with validated questionnaires: the Food Allergy Quality of Life Questionnaires (FAQLQs). Her research shows that a few factors determine this quality of life: the type of food that causes the allergy, the experienced gravity of the complaint, gender and the nationality of the patient seem to have a role. When analysing the factors índependently related to quality of life, experiencing anaphylaxis and being prescribed an adrenaline pen did not seem to have a significant contribution.
Goossens examined the level of knowledge and opinions of general practitioners (GPs), parents of children with a food allergy and the general Dutch public. She used an American questionnaire, which she adapted for use in the Netherlands, and compared the results of the two countries.
Dutch GPs’ knowledge about food allergies proved comparable with that of American GPs. In both countries, there appear to be significant knowledge gaps in the diagnosis of food allergy and recognition/treatment of anaphylaxis. These gaps in the knowledge of primary care doctors seem to be an international problem.
The knowledge of Dutch parents of children with a food allergy was significantly poorer than that of American parents. However, Dutch parents were more optimistic about different aspects of food allergy. This optimism can be explained by a lack of knowledge, given that a previous study showed that parents with less knowledge of food allergies had a better food allergy-related quality of life. Goossens also established that a higher level of education, being a member of a patient association, the involvement of an allergist and a history of anaphylaxis in the child determine the parents’ level of knowledge of food allergy.
Based on Goossens’ research, it would seem that the Dutch population has little knowledge about the most important food allergens, the symptoms of food allergy and possible treatment options. The Dutch population appears to underestimate the severity of possible allergic food reactions, and does not know what to do in the event of a food-allergy emergency. The American population appears to know more about food allergy and is more pessimistic about them than the Dutch population.
Patients with a food allergy depend on others in their everyday lives when it comes to the right diagnosis, good information provision, being prescribed emergency medication, careful avoidance of allergens, recognising symptoms and the right response to an emergency. Goossens therefore calls for increasing the population’s knowledge about food allergy and more understanding of patients with such an allergy: ‘Now we have measured the knowledge about food allergy, it is clear that the Dutch population needs a bit of education. I expect this to improve the quality of life of these patients and their families, but also that of people who may be un-diagnosed, if you know what I mean.’
Nicole Goossens, MSc (1986, Arnhem) studied Medicine at the University of Groningen. She conducted her PhD research through a collaboration of the departments of Paediatric Allergy/Pulmonology and General Practice at the UMCG. Her thesis is entitled: ‘Health-Related Quality of Life in Food Allergic Patients – Beyond Borders’.
Prof. Cisca Wijmenga will receive the 2022 Galjaard Award from the Dutch Society for Human Genetics (NVHG)
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