Our friend and contributor Anne F. Russell, MS, BSN, RN, AE-C , along with several collaborators, has published a new study to help nurses and doctors work with parents of food allergy patients on negotiating the challenges of feeding their families and themselves in the face of a the COVID-19 pandemic. They distributed a survey to parents, of whom 359 respondents met inclusion criteria. They found: “Concerns about COVID-19 exposure were expressed in 65.7% about accessing an emergency department and 73.6% had school reentry concerns; 66% had not discussed recommended anaphylaxis management algorithm changes with a provider; 85.8% had not discussed the temporary U.S. Food and Drug Administration food labeling policy with a provider. Most (62%) reported shortages of preferred safe food brands. 62% spent more time cooking safe foods from scratch. With regard to the recommendation by the U.S. Centers for Disease Control and Prevention (CDC) for classroom dining, 57.7% planned to request modifications. With regard to the CDC’s recommendation to use inhalers versus nebulizers, 37.7% had not discussed the topic with a provider. Ninety-two written comments were analyzed and grouped into seven themes.”-
They concluded: “New pandemic-related regulations, food supply chain disruptions, and evolving medical recommendations resulted in intensified burdens for respondents, including the increased time needed to complete food allergy management and school reentry concerns. Study results can inform clinical team members (e.g., physicians, nurses, dieticians) of effects that pandemic-related changes may have on this patient population, with subsequent consideration of patient-specific screening, education, and shared decision-making with regard to risk mitigation needs.”
The full paper “Parent perspectives on food allergy management and safety during the COVID-19 pandemic” is available free of charge from the Journal of Food Allergy. We asked Anne to share her thoughts about how this paper came about and ideas for parents.-Henry Ehrlich
AAC How did you come to write it? How did you assemble the team of co-authors?
Anne Shortly after WHO declared COVID-19 a pandemic, I conceptualized the study. At that time states had instituted stay-at-home orders, schools and universities ceased in-person instruction and food chain supply disruptions occurred. Evolving medical recommendations also ensued. I wanted to investigate how these abrupt and startling changes were impacting decision-making and safety of patients managing food allergies with risk for anaphylaxis. I was interested in transposing their reported experiences into concrete recommendations for allergy/immunology clinical teams (e.g., physicians; nurses) aimed at best assisting these patients. I selected a nurse co-author with vast experience practicing in school settings as I wanted to include school-related questions in the study survey. I also included another nurse as co-author with experience in informatics to assist with practical aspects of research. Both co-authors made useful contributions to the research project.
AAC Since the primary audience is medical professionals with a food allergy focus, how did you make decisions about what they needed to know, and how did you write the questionnaire accordingly?
Anne First a literature review was completed revealing sparse research on effects of the pandemic on daily food allergy management. The U.S. was only a couple of months into the pandemic at the time, so this result wasn’t surprising. Next, I thought about features of anaphylaxis prevention and preparedness, the cornerstone of daily food allergy management, to highlight in the parent study survey. Parent responses would determine how pandemic related challenges were or were not impacting these patients. Once survey responses were submitted and analyzed, I thought about subsequent recommendations to clinical teams based on study findings. The Journal of Food Allergy, which published the study, is a peer-reviewed medical journal targeting physicians, nurses and dieticians that specialize and practice in allergy/immunology with a sub-specialty in food allergy.
A pandemic involving a novel virus constitutes a public health crisis. However, I am optimistic we will have an endpoint sooner than we may expect, and strides have been made toward that goal. Thus, this research highlights time-sensitive findings unique to a specific period during an extraordinary global event. Typically practice changes occur slowly and incrementally. However, an abrupt public health crisis does not allow for such time and clinical teams must quickly adapt accordingly to assist patients facing unforeseen challenges. For example, I created table 5 in the article to provide clinical teams with recommendations for patient education discussion points to consider emphasizing during the pandemic based on patient needs revealed in study findings. Additionally, study findings can inform clinical teams of patient screening needs and risk mitigation discussion points unique to the pandemic to consider proactively discussing with patients.
AAC Did any of the data surprise you?
Anne I expected parents would be concerned about school re-entry prior to a COVID-19 vaccine. However, I was surprised the majority reported being highly concerned. Many of these families already struggle with school-related food allergy accommodation issues and adding COVID-19 concerns on top of those baseline challenges increases their burden. I was also struck by captured data indicating the pandemic led to additional health concerns for this patient population. For example, disruptions in the food supply chain meant many families experienced shortages of their food allergy safe and familiar food brands. Several aspects of this concerned me. First, it could create risk for nutritional deficiencies if shortages are prolonged while alternative safe brands are not found. Second, it meant many families had to seek unfamiliar food brands necessitating more time spent calling manufacturers regarding ingredients and other due diligence. Such time-intensive tasks also add to their burdens. Third, having to try new food brands may heighten fears of anaphylaxis, which adds to parental stress levels.
The pandemic underscored the need for patients with food allergies to prepare ahead for potential emergencies. Consider having a home back-up supply of nonperishable food allergy safe foods. Cooking and baking ahead to store or freeze a supply of food allergy safe foods may be beneficial. Consider contacting food manufacturers directly to purchase preferred food allergy safe brands. Having a several month supply of prescribed medication refills ensures availability for the near future. It’s also imperative to always have accessible unexpired prescribed epinephrine auto-injectors.
I encourage parents to be proactive in preparing for appointments with physicians, nurses, and dieticians. Have questions and concerns written down beforehand prior to telehealth or in-person appointments. Do not be shy about raising topics of concern in discussions with healthcare professionals. Telehealth and in-person clinic appointments are often scheduled for specific timeframes so make the most of that limited time.
Anne F. Russell, MS, BSN, RN, AE-C is a researcher, nurse scientist, nursing faculty and food allergy specialty nurse. She has sub-specialized in the field of food allergy for over 20 years including clinical allergy/immunology practice. Nurse Russell has published food allergy related articles including studies and has created food allergy patient educational materials for clinical use and public health education. She serves as peer-reviewer and editorial board member of the Journal of Food Allergy. Nurse Russell is also an active member of the American Academy of Allergy, Asthma & Immunology serving on several committees involved with advocacy, continuing medical/nursing education and research projects related to the food allergy patient population.