Completed SOAAR Food Allergy Research
Listed below are summaries of key food allergy research completed by Dr. Ruchi Gupta and her research team.
ASSESSING FOOD ALLERGY KNOWLEDGE, ATTITUDES, AND BELIEFS OF PARENTS, PHYSICIANS AND THE PUBLIC
Development of the Chicago Food Allergy Research Surveys: Assessing Knowledge, Attitudes, and Beliefs of Parents, Physicians and the Public
In 2006, Dr. Gupta and her colleagues realized that more and more American children were being diagnosed with food allergy each year. Although parents, doctors, and the general public play a critical role in the health and well-being of food-allergic children, little was known at the time regarding their knowledge, attitudes, and beliefs relating to food allergy. They developed a validated survey tool and assessed food allergy knowledge, attitudes, and beliefs among parents, doctors, and the general public. Parents, doctors, and members of the general public were then recruited to help develop the survey from 2006 to 2008. The research team reviewed past literature, created initial major themes, consulted a panel of nine experts, held six focus groups, created initial survey questions, consulted the expert panel again, held 10 cognitive interviews, tested reliability of the survey, condensed the survey, and finally, validated the survey with 150 parents, doctors, and adult members of the general public. The end products include a survey each for (1) parents of children with food allergy, (2) pediatricians and family physicians, and (3) adult members of the general public.
Food Allergy Knowledge, Attitudes, and Beliefs: Doctors
In 2008, we surveyed 407 US pediatricians and family doctors who manage and counsel children with food allergy. Overall, doctors answered 61% of the knowledge-based questions correctly. Most doctors knew that the flu vaccine is unsafe for egg-allergic children, that the number of food-allergic children is increasing in the US, and that there is no cure for food allergy. However, few knew that they can use oral food challenges to diagnose food allergy, that chronic nasal problems are not a symptom of food allergy, and that yogurts/cheeses from milk are unsafe for children with IgE–mediated milk allergies. Many doctors did not feel comfortable interpreting laboratory tests to diagnose food allergy or did not feel prepared by their medical training to care for food-allergic children. In conclusion, doctors knew a fair amount about food allergy, but as they themselves acknowledged, there are opportunities for improvement.
Food Allergy Knowledge, Attitudes, and Beliefs: General Public
In 2008, the research team surveyed 2,148 US adults online using a validated questionnaire to assess food allergy knowledge and attitudes among the general public. Overall, the general public answered 65% of the knowledge-based questions correctly. They knew the most in areas related to symptoms/severity and triggers/environmental risks of food allergy. Misconceptions mostly pertained to:
- The distinction between food allergy and food intolerance,
- The absence of a cure, and
- Current ways to treat food allergy.
Those with higher scores typically had prior knowledge of, familiarity with, or training in food allergy. Participants reported a wide range of perceptions, although there tended to be little stigma associated with food allergy--like banning nut products or establishingallergen-free tables in the cafeteria. More awareness of the difficulties faced by food-allergic children may help promote school policies to keep affected children safe.
Food Allergy Knowledge, Attitudes, and Beliefs: Parents
We surveyed 2,945 US parents of children with food allergy between January 2008 and 2009. Overall, parents answered 75% of the knowledge-based questions correctly. Most parents knew the signs/symptoms of an allergy reaction. However, fewer knew that adolescents are at a higher risk for deadly anaphylaxis than young children. There was a wide range of perceptions, although most agreed that children should carry an EpiPen at school and that schools should have staff trained in food allergy management. In conclusion, parents reported considerable knowledge about food allergy, though there were some important misconceptions. Most parents also reported that their child's food allergy had a negative impact on their personal relationships, namely on their marriage and their relationships with their child’s friends’ parents.
QUALITY OF LIFE RESEARCH
Food Allergy-related Empowerment and Quality of Life in Parents of Kids with Food Allergy
In light of growing evidence for the negative impact of childhood food allergy on parental quality of life, this study attempted to determine:
- If mothers and fathers differ in how empowered they feel they are to manage their child's food allergy? and
- Whether parents who report greater empowerment also report greater food allergy-related quality of life?
Results Our study of 850+ mothers and fathers of children with food allergy found that although mothers reported significantly greater empowerment than fathers to manage their child's allergy, they suffered significantly reduced quality of life. We found no association at all between empowerment and quality of life. When we looked at individual items of the quality of life scale, we found that the items that most adversely impacted quality of life all had to do with parental concern over accidental allergen exposure in the broader social environment where parents could not exert control over the situation (e.g. at school, daycare...etc).
Interestingly, although greater parental empowerment did not predict increased quality of life in our sample, we found that parents who reported adequate social and material support to manage their child's food allergy did in fact report significantly increased quality of life.
Conclusion More needs to be done in settings like schools, daycares, restaurants, and hotels to help allay parental concern about potential allergen exposure.
- Research Paper: Differences in Empowerment and Quality of Life Among Parents of Children with Food Allergy
Quality of Life Among Caregivers of Food-Allergic Children
To deepen our understanding of the burden that childhood food allergy places on parents and caregivers, we surveyed 1,126 U.S. parents. We found the effect of food allergy on parents’ lives vary widely with one exception: most parents were troubled by social limitations because of their child's food allergy.
Parents who knew more about food allergy and parents whose children had been to the ED for food allergy in the past year, had multiple food allergies, or were allergic to milk, wheat, or egg were worse off. This shows the diverse experience of caring for a child with food allergy and the importance of considering the severity of disease when understanding parental burden.
Our team has also recently published two comprehensive review articles about the many ways food allergy influences quality of life among affected patients, their families and caregivers. Links to these papers are listed below.
ECONOMIC IMPACT OF CHILDHOOD FOOD ALLERGY
The Economic Impact of Childhood Food Allergy in the United States
Landmark study: This was the first comprehensive study to estimate the economic impact of childhood food allergy in the United States. SOAAR also determined caregivers' willingness to pay for food allergy treatment. To accomplish this, SOAAR surveyed a representative sample of 1,643 caregivers of children with food allergy.
- Overall estimated annual cost of food allergy is $24.8 Billion, which corresponds to $4,184 per child.
- Direct medical costs (e.g. hospitalizations, doctor's visits) were estimated to be $4.3 Billion
- Costs borne by the family (e.g. costs of allergen-free foods, lost labor productivity) totaled $20.5 Billion.
- Caregivers reported a willingness to pay of $20.8 billion annually (out of pocket or through insurance) for a safe and effective treatment that allowed the child to eat all foods
This study was the first to establish that childhood food allergy results in significant direct medical costs for the U.S. health care system and even larger costs for families with a food-allergic child.
2009-2010 NATIONAL FOOD ALLERGY SURVEY DATA
In 2009-2010, SOAAR surveyed a random sample of 40,104 households with children in the U.S. The data collected from this survey generated significant results and conclusions that serve as a cornerstone for the food allergy community. The research listed in this section was compiled from data generated by this one survey.
Prevalence, Severity and Distribution of Childhood Food Allergy in the United States: Landmark Research
Using data collected in the 2009-2010 National Food Allergy Survey, SOAAR published landmark research which determined a comprehensive, representative estimate of the true prevalence and severity of childhood food allergy in the U.S. The data showed:
- 8% of children (1 in 13) have a food allergy and
- 40% of these children have experienced a severe reaction.
- The prevalence and severity of childhood food allergy is greater than previously reported. Data suggest that disparities exist in the clinical diagnosis of disease.
- Research Paper: The Prevalence, Severity and Distribution of Childhood Food Allergy in the United States
- PBS NewsHour: Gwen Ifill Interview with Dr. Ruchi Gupta
The Geographic Variability of Childhood Food Allergy
Using data from SOAAR's 2009-2010 National Food Allergy Survey,"we have found for the first time that higher population density corresponds with a greater likelihood of food allergies in children,” said lead author Ruchi Gupta, M.D., an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine and a physician at the Ann & Robert H. Lurie Children’s Hospital of Chicago (formerly Children’s Memorial). “This shows that environment has an impact on developing food allergies. Similar trends have been seen for related conditions like asthma. The big question is – what in the environment is triggering them? A better understanding of environmental factors will help us with prevention efforts."
- In urban centers, 9.8 percent of children have food allergies, compared to 6.2 percent in rural communities, almost a 3.5 percent difference.
- Peanut allergies are twice as prevalent in urban centers as in rural communities, with 2.8 percent of children having the allergy in urban centers compared to 1.3 percent in rural communities. Shellfish allergies are more than double the prevalence in urban versus rural areas; 2.4 percent of children have shellfish allergies in urban centers compared to 0.8 percent in rural communities.
- Food allergies are equally severe regardless of where a child lives, the study found. Nearly 40 percent of food-allergic children in the study had already experienced a severe, life-threatening reaction to food.
- The states with the highest overall prevalence of food allergies are Nevada, Florida, Georgia, Alaska, New Jersey, Delaware, Maryland and the District of Columbia.
- Research Paper: Geographic Variability of Childhood Food Allergy
- Chicago Tribune: Study: Urban kids have higher incidence of food allergies than rural ones
- Northwestern Now: City Kids Much More Likely to Have Food Allergies Than Rural Ones
- Allergic Living: City Kids More Prone to Food Allergies
Physician Diagnosis in Pediatric Food Allergy
Childhood food allergy is a serious health problem. However, little is known about the frequency and manner in which it is currently diagnosed. This study's objective was to describe parent report of physician practices in the diagnosis of pediatric food allergy. Using data from SOAAR's 2009-2010 National Food Allergy Survey, we found:
- 30% of children with food allergy never received a formal physician diagnosis, suggesting that food allergy is under-diagnosed.
- Lower income and minority households were more likely to have a child with an undiagnosed food allergy.
- One in 5 physician-diagnosed allergy was evaluated with oral food challenge.
True food allergy that goes undiagnosed or diagnosed food allergy that is not appropriately managed put children at increased risk for life-threatening reactions. Although simply avoiding the food (without consulting a doctor) may seem logical to a parent, it can be detrimental for the child. The absence of a doctor diagnosis can result in poor understanding of the risks of food allergy, including the fact that life-threatening reactions may occur regardless of the severity of previous reactions. In addition, without a formal diagnosis, the child may not have access to life-saving medications (ie, injectable epinephrine.) Remember that visible skin symptoms can be absent in allergic reactions. Skin symptoms (i.e. hives and swelling) were not present in more than half of severe reactions in this study. The absence of physically visible symptoms may prevent recognition of a severe reaction, putting a child at increased risk for life-threatening outcomes. Thus, involving a physician in the management of food allergy is critical.
The Epidemiology of Pediatric Milk Allergy in the US
Milk is one of the most common food allergies in US children, yet little was known about its distribution and diagnosis until this research was completed. This study aimed to better understand the nature of pediatric milk allergy in the U.S. by surveying nearly 40,000 U.S. parents in 2009-2010.
- Notably, SOAAR found that 20% of food-allergic children were allergic to milk
- Black and Asian kids were half as likely as their white peers to have a milk allergy.
- Thirty percent of milk-allergic children had experienced a severe allergic reaction.
- Children with milk allergy, the most commonly diagnosed food allergy in the US, were twice as likely to outgrow their allergy than children with other allergies.
Parent Report of Childhood Shellfish Allergy in the U.S.
Although shellfish allergy frequently results in emergency department visits, national prevalence studies focusing on shellfish allergy in children are scarce. This study describes parent reports of shellfish allergy in U.S. children collected in 2009-2010.
- Of the nearly 40,0000 children included in the study, 1.3% had a shellfish allergy.
- The average age for first reaction to shellfish allergy was 6 years and nearly one-half of all children with shellfish allergy had a history of severe life-threatening reaction.
- Shellfish allergy was less frequently diagnosed by a physician than other allergies (59% to 73%).
- Furthermore, children with a shellfish allergy were less likely to outgrow their allergy than children with other allergies.
These findings suggest that the impact of disease may be greater than previously reported and that additional efforts are needed to improve awareness and management of shellfish allergy among children in the United States.
Epidemiology of Childhood Peanut Allergy
Although peanut allergy is among the most common food allergies, no study has comprehensively described the epidemiology of the condition among the general pediatric population. Our objective was to better characterize peanut allergy prevalence, diagnosis trends, and reaction history among affected children identified from a representative sample of U.S. households with children.
- Of the 3218 children identified with food allergy, 754 (24.8%) were reported to have a peanut allergy.
- Peanut allergy was reported most often among 6- to 10-year-old children (25.5%), white children (47.7%), and children from households with an annual income of $50,000-$99,999 (41.7%).
- Although peanut allergy was diagnosed by a physician in 76% of cases, significantly more peanut allergy reactions were severe as compared with reactions to other foods (53.7% versus 41.0%, p < 0.001).
- Parents were significantly less likely to report tolerance to peanut as compared with the odds of tolerance reported for other foods (odds ratio 0.7, 95% confidence interval: 0.5-0.9).
- Childhood peanut allergy, which represents nearly a quarter of all food allergy, presents more severe reactions and is least likely to be outgrown.
- Although it is diagnosed by a physician in nearly three-fourths of all cases, socioeconomic disparities in regard to diagnosis persist.
Factors Associated with Reported Food Allergy Tolerance among US Children
A question asked by many parents is: "When will my child grow out of this allergy?" In an attempt to answer this question, we conducted the largest study of food allergy tolerance to date. This analysis used data from SOAAR's 2009-2010 National Food Allergy Survey.
- Approximately a quarter of children have outgrown their food allergy at an average age of 5.4 years;
- Children with allergies to milk, egg, or soy outgrow their allergies more frequently than children with allergies to peanut, tree nuts, or shellfish;
- Children with milk, wheat, egg, and soy allergy outgrew their allergy younger than children with other food allergies;
- Children with a history of severe reactions were less likely to outgrow their allergy; and
- Children who had their first food allergy reaction earlier in life were more likely to outgrow their allergy, regardless or allergen, severity, or symptoms
In sum, many different factors affect the development of tolerance. Our findings will hopefully help focus future prospective studies on the development of tolerance to foods, to help clinicians and parents manage their child’s food allergy.
FOOD ALLERGY: DIAGNOSIS, TREATMENT AND MANAGEMENT RESEARCH
Childhood Food Allergies: Current Diagnosis, Treatment, and Management Strategies
Food allergy is a growing public health concern in the United States that affects an estimated 8% of children. The National Institute of Allergy and Infectious Diseases (NIAID) convened an expert panel in 2010 to develop guidelines outlining evidence-based practices in diagnosing and managing food allergy. The purpose of this review was to aid clinicians in translating the NIAID guidelines into primary care practice and includes 6 content domains.:
- The definition and mechanism of childhood food allergy;
- Differences between food allergy and food intolerance;
- The epidemiology of childhood food allergy in the United States;
- Best practices derived from the NIAID guidelines focused on primary care clinicians' management of childhood food allergy;
- Emerging food allergy treatments; and
- Future directions in food allergy research and practice
The Pediatrician's Role in the Diagnosis and Management of Food Allergy
Childhood food allergy is a condition of public health importance and affects an estimated 8% of the population. Until a viable treatment or cure is readily available, improving management practices in clinical, social, and community settings remains essential.
To ensure children receive comprehensive care from his or her pediatrician, our recent article in Pediatric Annals describes best practices distilled from the 2010 National Institute of Allergy and Infectious Diseases guidelines in food allergy management, including:
- Documentation of a diagnosis based on reaction history;
- Appropriate diagnostic testing and test interpretation;
- Prescription of potentially life-saving medications;
- Counseling and educating patients’ families on prevention and treatment; and
- Referral to an allergist.
Pediatricians remain integral in caring for food-allergic children and are often the first, and sometimes only, physician managing a child’s food allergy.
- Research Paper: The pediatrician's role in the diagnosis and management of food allergy.
- I Will Thrive: A Video to Improve Food Allergy Management
- Northwestern Now: Disco Video Helps Pediatricians Manage Food Allergies
A Brief Intervention to Improve Food Allergy Knowledge Among Pediatricians
In our 2008 study of knowledge, attitudes and beliefs of doctors, we found that doctors had many misconceptions regarding food allergy. Doctors also expressed concerns regarding their clinical ability to manage and treat food allergy. Existing physician education tools were not tailored to meet the needs of the busy primary care doctor, so we developed one. This tool targets known misconceptions in food allergy and is a rapid way to address known knowledge gaps among doctors and identify areas in need of further intervention.
FOOD ALLERGY TOLERANCE AND ORAL FOOD CHALLENGES RESEARCH
Predicting Outcomes of Oral Food Challenges by Using the Allergen-specific IgE/Total IgE Ratio
Although allergists typically use allergen-specific IgE (sIgE) levels or skin prick test wheal sizes to identify food allergens that may provoke IgE-mediated food-induced allergic reactions, both tests have high rates of false positivity and mislabel patients who are tolerant as allergic to the food allergen. We conducted a retrospective chart review to examine the accuracy of the ratio of sIgE to total IgE ("Ratio") in predicting the outcome of challenges performed to confirm the development of tolerance.
Results: Interestingly, we found that the Ratio for participants who failed their challenge was higher than the Ratio of those who passed their challenge (failed 1.48% vs passed 0.49%; n = 195) and that the ratio was a stronger predictor of OFC outcome than sIgE alone. These trends were mostly associated with more persistent food allergens, such as peanut, tree nuts, shellfish, and seeds (failed 2.18% vs passed 0.41%; n = 93) (Ratio 0.81 vs sIgE alone 0.54; P < .01).
Conclusion: Our findings suggest that the Ratio is more accurate than sIgE alone in predicting outcomes of challenges performed to confirm the development of tolerance to select food allergens, especially to peanut and tree nuts. The Ratio may be useful in identifying patients most likely to pass oral food challenge.
CHICAGO PUBLIC SCHOOL-RELATED RESEARCH
Identifying Barriers to Chronic Disease Reporting in Chicago Public Schools: A Mixed Methods Approach
We have long known that rates of asthma and food allergy among students in the Chicago Public Schools (CPS) students have been underreported. The aim of this study was to determine the barriers to chronic disease reporting as experienced by CPS parents and school nurses. After conducting focus groups and key informant interviews with parents and school nurses, we identified three principal barriers to reporting:
- Lack of parental process knowledge;
- Limited communication from schools; and
- Insufficient availability of school nurses.
Parents were significantly more likely to successfully complete the reporting process if they knew about special accommodations for chronic diseases, understood the need for physician verification, and/or knew the school nurse. This suggests that increasing parental knowledge of the reporting process will allow schools to better identify and manage their students’ chronic conditions.
The Development and Implementation of the Chicago Public Schools' Emergency EpiPen Policy
In 2012, the Chicago Public Schools became the first large US school district to stock epinephrine auto-injectors in every single CPS school. Through the amendment of the CPS Administration of Medication Policy, school nurses were authorized to administer epinephrine to students that the nurse in good faith professionally believes is having a first-time anaphylactic reaction.
The policy was also amended to mandate the training of school personnel who work with students on the management and prevention of allergic reactions by students. Two years in, this policy has sparked a national conversation about the merits of providing undesignated epinephrine in the school environment.
This study analyzes the new policy and discusses some of the issues that have arisen over the past two years of its implementation.
- Research Paper: Journal of School Health, The Development and Implementation of the Chicago Public Schools Emergency EpiPen® Policy
Emergency Epinephrine Use for Food Allergy Reactions in Chicago Public Schools (2014)
Following national and local legislation, Chicago Public School (CPS) was the first large, urban school district in the nation to develop and implement an initiative to supply all public and charter schools in Chicago with epinephrine auto-injectors. Our paper reports that during the 2012-2013 school year, 38 CPS students and staff were given emergency medication for potentially life-threatening allergic reactions.
Other key findings include:
- Over half of students who were given emergency medication were previously unaware of their allergy;
- Peanut allergy was the most common cause of reactions, followed by fin fish;
- School nurses administered the medication the majority of the time.
Given the significant impact of stocking emergency auto-injectors during the initiative’s first year, we feel that schools across the country should consider adopting similar policies.
- Research Paper: "Emergency Epinephrine Use for Food Allergy Reactions in Chicago Public Schools", American Journal of Preventive Medicine, October 2014
- Chicago Tribune Article: "CPS gave 38 shots for allergic reactions in year", October 2014
- Allergic Living, "Stock Epi Saves 38 in Chicago Public Schools"
Asthma and Food Allergy Management in Chicago Public Schools
This study addresses the important issue of "action plans", which are health management plans that specify exactly what should be done in case of an asthma or food allergy-related emergency. Establishing an emergency action plan is an important component of managing both food allergy and asthma, and is something that all kids with these conditions should have on file with their school--just in case. However, our study found that half of CPS students with food allergy and a quarter of student with asthma do not have an emergency action plan on file with their school. Moreover low-income and minority students are less likely than their more affluent, White peers to have established a health management plan with their school. Therefore, the next phase of this research will determine the most effective ways to reach out to families of these students and facilitate the establishment of up-to-date management plans with their respective schools.