Articles

Guidelines for Managing Life-Threatening Food Allergies in Massachusetts Schools Anne H. Sheetz, Patricia G. Goldman, Kathleen Millett, Jane C. Franks, C. Lynne Mclntyre, Constance R. Carroll, Diane Gorak, Christanne Smith Harrison, Michele Abu Carrick

ABSTRACT: During the past decade, prevalence of food allergies among children increased. Caring for children with life-threatening food allergies has become a major challenge for school personnel. Prior to 2002, Massachusetts did not provide clear guidelines to assist schools in providing a safe environment for these children and preparing for an emergency response to unintended allergic reaciions. In 2001, the Asthma and Allergy Foundation of AmericdNew England Chapter. Massachusetts Department of Education, Massachusetts Department of Public Health, Massachusetts School Nurse Organization, parents, and other professional organiza- tions forged a successful collaboration to develop guidelines for managing life- threatening food allergies in schools. The guidelines assist schools by providing information on food allergies and anaphylaxis, emphasizing the need for team planning and development of an individualized health care plan, giving guidance on strategies to prevent accidental exposure to specific allergens in school settings. and offering information on emergency responses should unintended exposures occur. The collaborative process for develop- ing the guidelines, which continued during the distribution and implementation phases, set a tone for successful multidisciplinary teamwork in local schools. ( J Sch Health. 2004;74(5):155-160)

he number of school-aged children with life-threatening T food allergies to common foods such as peanuts, tree nuts, milk, wheat, soy, fish, and shellfish increased dramati- cally the past 10 years.' Schools face the dual challenges of providing a safe environment for these children and prepar- ing for an emergency response should unintended allergic reactions occur. In 2001, the Asthma and Allergy Foundation of AmericaNew England Chapter (AAFA/NE), Massachusetts Department of Education (MDOE), Massachusetts Department of Public Health (MDPH), Massachusetts School Nurse Organization (MSNO), parents, and other professional organizations forged a successful collaboration to give guidance to schools in caring for students with food allergies. The document, Managing Life Threatening Food Allergies in Schools, emphasizes the role of school nurse as developer, facilita- tor, educator, and supporter of the school-based program;

Anne H. Sheetz, MPH, RN, CNAA, Director. School Health Services, Massachusetis Department of Public Health. 250 Washington St., Bosion, MA 02/08; Patricia G. Goldman, MPA, Executive Director, Asthma and Allergy Foundation of Americahkw England Chapter, 220 Boylston St.. Chestnut Hill, MA 02467; Kathleen Millett, BS, LN. Administraior, School Nuirition Safety and Climate. Massachusetts Department of Educaiion. 350 Main St., Malden, MA 02148; Jane C. Franks, RN, BSN, MBA. Coordinator, School Health Services, Lexington Public Schools, 7 Dexter Road, Lexington. MA 02420; C. Lynne Mclniyre, RN, PhD, Quality Assurance and Evaluation Nursing Adviser, Massachusetts Department of Public Health, 250 Washington St., 5th floor, Boston, MA 02108; Constance R. Carroll, BS, MPH, Health Systems Coordinator, Mas.tachusetts Department of Public Health. 78A Lawrence Road. Boxford. MA 01921; Diane Gorak, BSN, ME$ RN, School Health Advisor, Massachusetts Department of Public Health. 146 Upton Road, Westhorough. MA 01581; Christanne Smith Harrison, MPH, RD, former Nutrition Education, Training and Outreach Coordinator, Massachusetts Department of Education, 124A Weri Ave.. Hamilion, NJ 08610; Michele Abu Carrick, MSW, Independent Clinical Social Worker, 239 West St., Reading. MA 01867. This article was submitted December I , 2003, and accepted for publication March 12, 2004.

defines responsibilities of all personnel including faculty and food service staff stresses the need for comprehensive school policies; and establishes the school administrator's role and commitment as critical to policy implementation and enforcement.

The collaborative effort set the tone for success in local schools through multidisciplinary teamwork. This undertak- ing represented the beginning of a journey to improve the school life for thousands of children who face the risk of anaphylaxis from food and other life-threatening allergies.

INCIDENCE AND PREVALENCE With the increasing prevalence of food allergies the past

two decades,' care of students with life-threatening allergies has become a major issue for school personnel. An esti- mated 8% of children under age three years, and approxi- mately 2% of adults have food allergies,2 while as many as 40% to 50% of those with a diagnosed food allergy are at high risk for anaphyla~is.~ The primary preventive measure involves avoiding exposure to diagnosed food allergens; however, studies show accidental exposure as c ~ m m o n ~ , ~ (Figure 1).

Children spend up to 50% of their waking hours in school,6 and foods containing allergens are commonly found in schools. Thus, the likelihood of allergic reactions occurring at school is high. Though initial allergic reactions tend to occur most frequently at home, subsequent reac- tions reportedly are more likely to occur outside the home or at scho01.~ Among children registered in the US Peanut and Tree Nut Registry, 16% (750 children) reported having an allergic reaction at school.'

In response to increased prevalence of children with allergies, and elevated risk for allergic reactions occurring at school, the American Academy of Allergy, Asthma, and Immunology (AAAAI) outlined considerations for manag-

Journal of School Health May 2004, Vol. 74, No. 5 155

ing children at risk for anaphylaxis in schools.R The guid- ance addressed all types of life-threatening allergies includ- ing allergies to latex, insect venom, drugs, food, and exercise-induced anaphylaxis. Other organizations such as the Asthma & Allergy Foundation/NE’ and the American Academy of Pediatrics”’ also presented guidance on manag- ing children with allergies. Educators and health profes- sionals also emphasized the need for greater attention to children with life-threatening allergies and offered recom- mendations for creating a safe environment at

Despite this guidance, school personnel often remain unaware of specific issues surrounding management of children with life-threatening allergies, especially those with life-threatening food allergies. A study of practices in Michigan schools found significant needs regarding staff education and policy development around the growing problem of life-threatening food allergies.IR Some schools did not offer food-allergy education for staff, or staff train- ing in administering epinephrine for emergency treatment of anaphylaxis. Among schools that offered education,

more than one-half relied on parents of children with food allergies to educate staff, and often no formal mechanism existed to provide school-wide education.

Many schools did not offer a system to identify student5 with food allergies for staff on a school-wide basis. Though several schools implemented policies to prevent accidental exposure such as “no sharing” food policies and instruction for food service personnel on cross-contamination issues, few (21%) addressed the need to read food labels for hidden ingredients. Only 16% of schools reported having written individual emergency plans for staff to follow for an allergic reaction, and epinephrine was not always readily accessible for emergency use in treating anaphylaxis.

Other studies confirmed a need for more education and guidance for school personnel. In a study involving 100 children with peanut or tree nut allergies who had allergic reactions at school, an emergency plan was available for only 33% of students, and was followed only 75% of the time.7 Causes of allergic reactions included ingestion of baked goods containing the allergic substance, food sharing

Figure 1 Studies on Life-Threatening Allergies in Children

Author Date Subjectrritle Findings

Sicherer SH, et a15

Sicherer SH, et al’

Rhim GS, et al ”

Nowak-Wegrzn A, et a1 ’’

1998 Clinical features of acute allergic reactions to peanut and tree nuts in children.

2001 Characteristics of allergic reactions in schools and day care.

2001 School readiness for children with food allergies.

2001 Food allergic reactions in schools and preschools.

At least one-half of children with peanut allergy had

A high percentage of accidental exposures occurred accidental exposure after initial reaction.

at school.

0 16% of 750 participants in the US Peanut and Tree Nut Allergy Registry reported 124 allergic reactions in school or day care. Epinephrine was given for 28% of the reactions.

0 An emergency plan was available for 33% of the reactions and followed only 73% of the time.

0 More than one-half of schools offering education

0 Only 21 % of school policies addressed the need

0 Only 16% of schools reported having a written

relied on parents to provide schoolwide education.

to read food labels for hidden ingredients.

emergency plan for staff to follow in the event of a life-threatening allergic reaction.

0 A nurse was available in only 23% of the allergic reactions; 25% of the children had no previous life-threatening food allergy diagnosis.

0 18% of 132 students with life-threatening food allergies experienced an allergic reaction at school in the past two years.

for treatment. 0 Of these, 14% did not have a physician’s order

0 16% did not have medication available at school. 0 All but one school had a person trained to

administer epinephrine; 22% did not have a back-up person identified.

156 Journal of School Health May 2004, Vol. 74, No. 5

among children, cross-contamination, and hidden ingredi- ents in a “safe” food. Delay in administering medication was attributed to factors such as failure to recognize symp- toms, inability to activate epinephrine, and calling parents to pick up their child versus immediately activating the emergency response plan. Another study of 132 children with food allergies found 18% had experienced an allergic reaction at school during the past two years.‘’ Of these students, 14% did not provide a physician’s order for treat- ment, and 16% did not have medication available at school. All but one school had a person trained in administering epinephrine, but 22% of schools had no back-up person.

Overwhelming evidence confirms the need for under- standing management of food allergies in schools, includ- ing mechanisms for identifying children at risk for allergic reactions, protocols that prevent accidental exposure to allergens, emergency procedures for responding to allergic reactions, and education for staff.

REGULATORY INFRASTRUCTURE Massachusetts was fortunate to have school health regu-

lations and an infrastructure in place as managing food allergies in schools became increasingly critica1.20-22 The option of delegating administration of epinephrine by auto- injector to unlicensed personnel (under a school-nurse managed system) was established with development of regulations governing administration of prescription medications in public and private schools in 1993.22 Also in 1993, data collection from school health programs was made possible with implementation of 36 model programs known as Enhanced School Health Services2’ (ESHS) programs, now renamed Essential School Health Service Programs. These programs were required to report informa- tion on health service activities including medication admin- istration. Data from 1995 to 1997 showed that the number of students with prescriptions for Ana Kits” or EpiPens” was

During this same period, the state public health department noted an increase in number of concerned parents calling about lack of school preparedness.

In 1996, MDPH recognized the need to provide specific guidance i n regulations governing administration of epinephrine to children experiencing a life-threatening allergic event and moved to amend the medication regula- tions. Because anaphylaxis is considered an emergency, the new regulations encouraged school nurses to teach school personnel to administer Epi-pens”. Regulations addressed issues of training, planning, risk reduction, storage of the Epi-pens@ (including on the student’s person when appro- priate), a plan for self-management when appropriate, and immediate notification of local emergency medical services system when epinephrine is administered. MDPH also developed a training curriculum for school nurses.

MDPH publicized changes to the regulations and encouraged all public school districts and non-public schools to register for training of unlicensed personnel in this critical area. Despite these efforts, the number of regis- trant schools remained low though the median monthly rate of prescriptions on file for epinephrine increased to 8.3: 1,OOO students in 2002.2s

DEVELOP1 NG THE C U I DELI NES During the fall of 2001, parents and staff from the

AAFA/NE approached the Massachusetts Department of Public Health and Massachusetts Department of Education to express concern about the rising number of children with life-threatening food allergies, the recent fatal food reaction of a child at school, and lack of standardized protocols to address needs of these children in Commonwealth schools. MDOE and MDPH established a multidisciplinary task force to develop guidelines for schools. MDOE was the lead agency because it oversees educational operations, whereas MDPH acts as a consulting agency for school health care.

MDOE sent letters to the following organizations invit- ing them to participate: Asthma and Allergy Foundation of America/NE (both staff and parent volunteers), Massachusetts School Nurse Organization (MSNO), MDPH School Health Unit, Massachusetts School Food Service Association, Executive Committee of the Massachusetts School Physicians, Allergy and Immunology Division of Children’s Hospital Medical Center, Massachusetts Teachers Association, Emergency Medical Services, and Framingham State College.

Convened in October 2001, the group was charged to develop comprehensive guidelines to enable students with life-threatening food allergies to receive all education-related benefits in a safe school environment, and assist schools in using a team approach to develop and implement policies and protocols to care for students with these allergies. During the first meeting, several parents shared experiences working with school personnel, many of whom they felt were unprepared to care for their children and uneducated about the serious nature of this health condition. Other parents discussed positive experiences used later to develop model programs. Parents’ major concerns included lack of trained personnel and standardized protocols for addressing children with life-threatening food allergies in school settings. Concerns related to such issues as cleaning proce- dures, food preparation, and designation of allergen-free areas.

Committee members shared a vision to guide the final product. Parents and professionals working i n schools should understand the guidelines easily. The guidelines should be shared with every staff member at each school enrolling a child with a life-threatening food allergy. The guidelines should assist public and non-public schools to develop comprehensive policies and procedures to care for children with life-threatening food allergies. The final prod- uct should be formatted so schools could easily copy and adopt relevant sections, such as roles for each staff member.

At this meeting, documents related to life-threatening food allergies were distributed for review. The first step involved developing an outline, a challenging task because of the complex issue and the education needs of school personnel. After completing the outline, all group members were assigned responsibility for developing one content area (Figure 2). The group set aside an entire day to launch the project. MDOE supplied space and laptop computers. Members brought published references, and each group focused on their specific assignment. This successful strat- egy resulted in significant progress on the first draft in a single day.

By January 2002, MDOE collated and edited the draft, and circulated it to members for review. Task force physi- cians critiqued the draft for consistency with medical prac-

Journal of School Health May 2004, Vol. 74, No. 5 157

tice standards, and the document was submitted for legal review by the two state agencies. MDOE published the final document in September 2002.

OVERVIEW OF THE GUIDELINES The document includes the following sections: an

overview, including the role of schools in managing life- threatening food allergies; information on food allergies and anaphylaxis; the team planning process, including development of individualized health care plans; guidance on implementing strategies to prevent accidental exposures in all areas of school (eg, playgrounds, gyms, etc.) and during all school activities (eg, arts and science projects, bus transportation, etc.); and information on responding to emergency situations.

Several appendices contain detailed information on topics such as reading food labels, protocols for training unlicensed personnel to administer epinephrine, developing a school district policy on managing students with life- threatening food allergies, and legal issues related to students with life-threatening food allergies. The appen- dices facilitate access to information and are easily repro- duced and shared. For example, Appendix A contains pull-outs on the roles of specific individuals including students, parents, school nurses, school administrators, classroom teachers, food service personnel, school bus driverskompanies, coaches, and other onsite personnel in charge of school activities. Appendix G provides a sample food allergy action plan adapted from the Food Allergy and Anaphylaxis Network (FAAN).

Figure 2 Assignments

for Developing Conbnt Areas

A=ign.d Contont h a

AAFAlNE Representatives Parents

MDPH Representatives MSNO Representatives

MDOE Food Service Director Representatives

School Nurses Parents

Parents Various professional disciplines

Description of food allergies

Prevalence Characteristics of adverse

reactions Parents’ perspectives

Planning process Development of the

Individualized Health Care Plan (IHCP)

Establishment of multidisciplinary teams

Role of food services Risk reduction Appendices on food

labeling

Response to emergencies

Roles in managing life-threatening allergies in schools

Throughout the document, key points are highlighted to draw attention to information or recommendations the committee believed vital to successful management of students with life-threatening food allergies at school. For example, consistent with an interdisciplinary model, a team meeting with parent participation should occur as soon as possible after the school learns a child with a food allergy will be enrolled. Because the school nurse is critical to planning and emergency response, the guidelines recom- mend that every school building with a student at risk for anaphylaxis from a food allergy should employ a full-time school nurse. As vital partners in preventing exposure to allergens, food service staff expertise and involvement are essential to planning and implementation efforts. While the guidelines address food allergies, they may be adapted to any life-threatening allergic condition such as bee-stings or latex allergies.26

I M PLEM E NTAT I 0 N Distribution. When Managing Life Threatening Food

Allergies in Schools was distributed in the fall of 2002, the Massachusetts Commissioner of Education wrote an intro- ductory letter to superintendents and “other interested persons.” The Commissioner’s endorsement added credibil- ity as the document was distributed to school districts across the state. Initially copies were distributed to all superintendents, food service directors, and nurse leaders. MDOE also placed the document on its web site.

The MDPH School Health Unit’s autumn newsletter, News in School Health, publicized availability of the guide- lines to more than 3,500 school and board of health recipi- ents. MDPH staff disseminated information about the document to 183 school districts as part of the Essential School Health Services grant network. This group of nurse leaders formed a core of committed individuals who, upon receiving firm directives, proceeded to develop comprehen- sive programs in life-threatening allergy awareness in schools across the Commonwealth.

Education Sessions. In preparing to release the guide- lines, education sessions were planned. The Asthma & Allergy Foundation of America/NE sponsored information sessions at their regional support group sites. Representatives from MDOE and MDPH discussed the guidelines and encouraged parents, school nurses, and interested community members to become active partici- pants in formulating local school district policies, proce- dures, and implementation plans. The AAFA/NE also developed a four-page document for parents on how to use the guidelines.

In November 2002, the Department of Education, Nutrition Programs and Services, organized a half-day conference to introduce the guidelines to school administra- tors, nurses, teachers, and food service managers and personnel. Enthusiasm and excitement generated by the guidelines were such that, while 250 people attended the program, many were turned away due to lack of space. A second program was planned and another 250 participants filled the room.

The conference addressed five content areas: an MDOE representative introduced the guidelines and gave an overview of the content; a board-certified allergist provided an educational presentation on life-threatening allergies and discussed appropriate interventions for preventing and

158 Journal of School Health May 2004, Vol. 74, No. 5

treating anaphylaxis; a parent discussed the difficulties of keeping a child with life-threatening food allergies safe; a school nurse leader presented information on developing a life-threatening allergy awareness program in schools; and a food service manager discussed challenges of feeding children with life-threatening food allergies in a school cafeteria.

OUTCOMES Anecdotal Feedback. Preliminary feedback has been

positive. Reports from parents indicate the publication enabled them to institute preventive measures with greater ease when the child with life-threatening food allergies enters school. School nurses expressed appreciation for availability of standards on which to base care plans for these students. Administrators reported increased under- standing about the critical nature of life-threatening food allergies and the need for school policies and preparation. Numerous federal and state agencies contacted MDOE and MDPH for copies of the document.

Zjaining to Administer Epinephrine. MDPH expected an increase in schools registering to train unlicensed personnel to administer Epi-pens". In August 2002, prior to publication of the guidelines, 131 school districts and non- public schools registered. This figure rose to 227 by June 2003. While this figure represents a 73% increase, the goal is to register 100% of the Commonwealth's school districts and non-public schools.

Quality Improvement Initiative. In September 200 1 , MDPH requested the 109 Essential School Health Service Programs to begin voluntary reporting each time a child received epinephrine for anaphylaxis at school. The report form contained questions such as type of allergy, trigger, symptoms, person who administered the epinephrine, and outcome. During the 2001-2002 school year, 49 cases were reported. From September 2002-June 2003,66 reports were sent to the department. All outcomes were positive.

Amendment to Medication Regulations. As work progressed, it became clear that regulations for training unlicensed personnel to administer epinephrine needed to be amended to include before-school and after-school programs. In November 2003, MDPH promulgated regula- tions addressing this issue. These regulations also include a requirement for statewide reporting when epinephrine is administered at school. Therefore, the original short-term quality improvement project was incorporated into the regulations, establishing a statewide surveillance system to monitor prevalence of anaphylactic reactions at school. Data from the reports will guide school personnel as they formulate policies to ensure the safety of students with life- threatening food allergies.

Formal Evaluation. A formal evaluation that systemati- cally examines the impact of the guidelines on students with life-threatening food allergies, their parents, school nurses, food service personnel, teachers, and school admin- istrators is in the planning process. Data will be collected through a combination of surveys and focus groups.

CONCLUSION The goal for establishing guidelines always was clear.

The collaborative group wanted to develop a user-friendly document that enabled schools to establish a successful and

realistic program for an individual school district, while meeting the safety, psychosocial, and medical needs of students with life-threatening food allergies. Managing Life Threatening Food Allergies in Schools provides a road map for developing a successful life-threatening allergy awareness program. I t may be accessed at http://www.doe.mass.edu/cnp/2002/news/allergy.pdf. H

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Executive Summary for the 2001 -2002 School Year. Boston, Mass: Massachusetts Department of Public Health; February 2003.

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A S H A P A R T N E R S

These institutions and corporations have expressed their commitment to and support of coordinated school health programs by joining with the American School Health Association as an ASHA Partner.

The contributions of ASHA Partners enable ASHA to continue to shape standards of practice for school nurses, physicians, health educators, and mental and social health professionals, to maintain high-quality education programs, and to conduct and report research on the cuttingedge.

Nurse Achievement Award, School Health Educator of the Year, and sponsorship of the John P. McGovern Annual Lectureship in School Health. We thank ASHA Partners for their support.

Programs supported by ASHA Partner contributions include: sponsorship of the Outstanding School

President's Diamond Endowment Partner + + + McCovern Fund for the Behavioral Sciences, 221 1 Norfolk, Suite 900, Houston, TX 77098-4044 MetLife Foundation, One Madison Ave., New York, NY 10010-3690 Paso Del Norte Health Foundation, 1 100 N. Stanton, Suite 5 10, El Paso, TX 79902

Platinum Endowment Partner + + BMS Virology, Bristol-Myers Squibb Company, 777 Scudders Mill Road, Plainsboro, NJ 08536

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Silver Endowment Partner + + + + +

College of Health and Social Services, New Mexico State University, MSC: 3446, Educational Services Center, Las Cruces, NM 88003-8001 Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843-4243 Department of Health Science Education, College of Health and Human Performance, University of Florida, P.O. Box 118210, Gainesville, FL 3261 1-8210 National Association of State School Nurse Consultants, Inc., P.O. Box 708, Kent, OH 44240 William V. MacGill6r Co., 1000 Lombard Road, Lombard, IL 60148

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