Approximately 7% of children worldwide are diagnosed with food allergy. Recent years have seen a greater understanding of the physical symptoms of the disease, and with this an increased awareness of the burden of living with food allergy in its emotional and social aspects.
The real fear factor of life-threatening reactions, the need for constant vigilance and carrying medication always, and the limitations on social activities, represent a source of anxiety for patients and their families.
A series of important findings on allergy-related anxiety were presented at PAAM 2019, 17-19 October Florence by experts in the field from Europe and the US.
What does food allergy related anxiety look like?
“My son needed to strictly avoid peanuts, tree nuts, sesame seeds, dairy, eggs, wheat, soy and corn. I constantly worried about his emotional wellbeing. How would he survive in school and in life?”, says Erin Malawer, UK, mother of an allergic child.
Data from the FARE patient registry presented at PAAM 2019, which evaluated 620 patients with food allergy and their caregivers in the US, find that 71% of individuals have experienced food allergy-related mental health concerns.
“Common apprehensions include intrusive thoughts about food allergy such as ‘what if I am accidentally exposed to an allergen, what if I am not present when my child has an allergic reaction?’ Physical sensations of anxiety such as increased heart rate, changes in breathing and panic attacks and changes to behavior to reduce anxiety or fear, such as avoiding safe foods and avoiding social situations that may involve food.” Says Linda Herbert (PsyD), Children’s National Health System, Washington DC
Data are in line with previous published research held at a Food Allergy Referral Centre (FARC) in the Veneto Region in Italy by Antonella Muraro group.
“We can notice some alarm bells such as a low quality of life, avoidance coping strategies, social isolation, distorted perceptions of the real dangers, unmanageable worry about a reaction, restriction of daily and social activities, leading an excessively restricted diet, and not allowing age-appropriate outings” says Laura Polloni (PsyD), FARC-Padua University Hospital (Italy).
In many studies, dysfunctional anxiety has been related to previous anaphylaxis episodes. As a life-threatening event, anaphylaxis may lead to post-traumatic stress reactions in patients and caregivers who assisted. Another important finding confirmed by several studies is that children and adolescents with food allergy reported higher separation anxiety. This may reflect adaptive strategies for youth with food allergy that can become excessive for a subset of children.
Fear and vigilance: from beneficial to dangerous
While some anxiety – short lived and related to key events – is to be expected and may even be helpful if it fosters allergen avoidance an preparedness to emergency, a rising concern is that increased anxiety in patients and caregivers does not improve adherence to food allergy management plans and becomes dangerously counterproductive.
For instance, increased anxiety may lead to a reluctance in undergoing medical procedures such as oral food challenges, or even more dangerous coping mechanisms, known as “avoidance coping” which involve avoiding medical appointments, not carrying EAI, not informing restaurants about food allergies, or poor adherence to medical dietary advice.
“As anxiety increases, all of its protective effect disappears. On the other hand, a complete absence of anxiety may lead to a risky lack of vigilance. ” says Laura Polloni (PsyD), FARC – Padua University Hospital.
What then is the right amount of anxiety in food allergy?
Mandell et- al. mention the “Goldilocks principle” to refer to a level of anxiety that is “just right” for families’ adjustment to living with food allergy and optimal quality of life.
This optimal response also called “relaxed readiness” facilitates adaptive coping and effective disease management while minimizing maladaptive hypervigilance and potentially dangerous risk-taking behavior.
A multidisciplinary team is key
As recommended by EAACI Guidelines, facilitated access to psychological interventions through coordination among healthcare professionals should be ideally put in place for the effective treatment of food-allergic patients.
The first thing to determine when confronted with a seemingly anxious patient or caregiver with food allergy is whether the anxiety is appropriate or excessive. Anxiety disorders have specific diagnostic criteria, and are characterized by persistent anxiety that causes clinically significant distress or impairment in functioning. Consultation with a mental health professional is usually warranted if an anxiety disorder is suspected or diagnosed.
“Monitoring QoL, facilitating self-management, promoting food allergy awareness and education in schools, addressing patients organizations can ameliorate anxiety symptoms, however in some cases this is not enough. Both clinicians and patients sometimes do not feel comfortable in referring to mental health services even when needed, and many situations remain undertreated. A multidisciplinary patient-centred approach should be considered. Patients and families may benefit from different psychological interventions such as psychoeducation and counselling that are mainly focused on improving patients’ and families’ awareness of their difficulties and strengths in dealing with food allergy and promote more adaptive coping, FA specific psychological support to allow patients to express feelings in a safe environment, to alleviate distress and prevent psychopathological risk – or psychotherapy for more structured psychological symptoms and mental health problems.” says Laura Polloni (PsyD), FARC – Padua University Hospital.
From a clinical perspective, more mental health professionals need to be trained to understand the unique aspects of food allergy that make life stressful, and impress on allergy clinics the importance of establishing connections with mental health professionals either by hiring them into their own divisions or reaching out to therapists in their communities.
“Allergists need to be proactive and anticipate that their food allergy families will be stressed and at times anxious, so that families don’t need to be the ones to reach out. This means allergists should ask families how they are doing, how they are coping, what stresses them, and if they need it provide them with handouts about mental health and referrals to mental health professionals.” says Linda Herbert (PsyD), Children’s National Health System, Washington DC.
The European Academy of Allergy and Clinical Immunology (EAACI) is an association of clinicians, researchers and allied health professionals founded in 1956. EAACI is dedicated to improving the health of people affected by allergic diseases. With more 11,000 members from 122 countries and over 75 National Allergy Societies, EAACI is the primary source of expertise in Europe for all aspects of allergy.