Journal of Asthma & Allergy Educators

August 2012

Feature Article

Part 2: Pertinent Food Allergy Education in a Pediatric Ambulatory Care Setting with a Focus on Anaphylaxis Anne F. Russell, BSN, RN, AE-C, Laura Lin Gosbee, MASc, and Mary M. Huber, RN, BSN, MS

Abstract: Management of food allergy on a daily basis is multifaceted, time consuming, costly, and becomes compounded when multiple food allergies are involved. Allergen avoidance methodologies, monitoring of signs/ symptoms of allergic reactions, handling serious medication needs, and planning ahead for a potential emergency due to an accidental exposure can be demanding concerns to the patient/family. Due to the complexity of this diagnosis, its implications to health-related quality of life, and extensive patient/family informational needs, it was necessary to divide this article into a 2-part series. This is the second article of the series. The content of Part 1 of the series focused on patient education associated with common food allergens, food allergy avoidance (eg, allergen identification, ingredient label reading, hidden allergens, cross-contact, precautionary labeling, potential routes of accidental exposures) and the food allergy action plan. Part 2 of the series reviews food-induced anaphylaxis and associated patient educational interventions (eg, use of self-injectable epinephrine, medical identification). Both parts of the series consider developmental concerns of the food allergic young child and adolescent. Parts 1 and 2 should be read collectively to acquire a complete view of suggested patient education for the newly diagnosed food hypersensitive pediatric patient and the role of a food allergy educator in an ambulatory care setting. Keywords: developmental stage; food allergy educator; foodinduced anaphylaxis; human factors engineering; self-injectable epinephrine

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his article is the second of a 2-part series that provides a broad overview of key points related to the food hypersensitive pediatric population with a focus on young children, adolescents, and parents/adult caregivers. In Part 1 of this series, content was presented that covered the definition of food allergy and data indicating that the prevalence of this diagnosis continues to be increasing. Common food allergens (eg, milk, egg, wheat, soy, peanut, tree nut, shellfish, and fish) were identified. Also noted was the growing importance of sesame and seeds as potent allergens. Part 1 also addressed the first set of suggested patient education teaching topics for newly diagnosed patients/families including food allergy avoidance (eg, reading ingredient labels, hidden food allergens in foods/nonfoods, cross-contact concerns, precautionary labeling, potential routes of exposure) and the importance of food allergy action plans. Health-related quality of life issues were also highlighted with associated caregiver and patient considerations. As previously described in Part 1, an interdisciplinary team approach to food hypersensitive patients is encouraged to facilitate comprehensive care. A description of the function of a food allergy educator (FAE) in ambulatory care settings was also provided. Initial patient education would be deficient without addressing food-induced anaphylaxis, recognition of the signs/ symptoms of anaphylaxis, use of self-injectable epinephrine, and recommendations for medical identification. Thus, Part 2 of the series considers these topics as well as further discussion of developmental concerns in the pediatric patient with food allergy. Parts 1 and 2 should be read collectively to acquire a complete view of suggested patient education for the newly

DOI: 10.1177/2150129711434770. From Spring Arbor University in Spring Arbor, Michigan (AR); Red Forest Consulting, LLC, Ann Arbor, Michigan (LLG) and CPR Knowledge, Plymouth, Michigan (MMH); The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Address correspondence to Anne F. Russell, BSN, RN, 2900 Packard Road, Suite 1, Ypsilanti, MI 48197; e-mail: [email protected]. For reprints and permissions queries, please visit SAGE’s Web site at http://www.sagepub.com/journalsPermission.nav. © 2012 The Author(s)

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diagnosed food hypersensitive pediatric patient and the role of a FAE in an ambulatory care setting.

Food-Induced Anaphylaxis Anaphylaxis is defined as a serious allergic reaction that is rapid in onset and may cause death.1 In immunoglobulin E (IgE)–mediated food-induced anaphylaxis (FIA), systemic mediators are released from sensitized mast cells and basophils. Frequently with FIA, there will be a rapid onset and progression of symptoms over minutes to hours after food allergen exposure. FIA can be uniphasic, biphasic, or protracted in development. Fatalities from FIA have been reported within 30 minutes to 2 hours after food allergen exposure.1 Comorbidities that increase the risk of FIA and may affect the severity of symptoms and response to treatment include asthma (eg, especially in adolescents and young adults), cardiovascular disease (eg, especially in middle-aged and older patients), mastocytosis, chronic lung disorders, and anatomic airway obstruction.1 Medications such as beta blockers, which may decrease response to epinephrine, may also affect treatment effectiveness.1 Deaths due to FIA are most frequently associated with peanut or tree nut ingestion and often involve the delayed use of epinephrine or improper dosing of this medication.1 It is important for the clinician to be mindful of this information and to share it with patients/families to underscore the seriousness of this diagnosis and potential consequences of noncompliance.

Asthma as a Risk Factor in Fatal FoodInduced Anaphylaxis In 2001, Bock et al reported on fatalities associated with FIA in hopes of gaining better insight into prevention methodologies.2 They analyzed 32 fatal cases that were reported to a national registry established by the American Academy of Allergy, Asthma and Immunology and the Food Allergy and Anaphylaxis Network (FAAN). Most of the victims were adolescents or young adults and all but one had asthma. Peanuts and tree nuts were the culprits in 90% of the fatalities and 30 of the victims knew of their preexisting allergy. Fish and milk were the food allergens responsible for 2 of the deaths that occurred in younger children. Most of the victims did not have self-injectable epinephrine (SIE) available at the time of their reaction. The researchers concluded that fatalities associated with FIA was a major health problem calling for improved education of the profession, patients, and the public.2 In 2007, this identical research team analyzed 31 deaths associated with FIA that were reported to the same registry between 2001 and 2006.3 All the victims with available medical information had asthma. The majority of deaths involved adolescents and young adults. Seventeen of the deaths were due to peanut, 8 to tree nuts, 4 to milk, and 2 to shrimp. The deaths occurred at home, schools, friends’ homes, restaurants, work settings, and camps. Again, the lack of readily accessible SIE was significant. Twelve of the victims with known peanut or tree nut allergy consumed desserts prepared away from

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home and did not inquire about ingredients. Given the similarity in characteristics associated with these FIA fatalities, Bock et al identified suboptimal gaps in education and management including a lack of instruction at all levels, a lack of preparedness of patients/families to respond appropriately to reactions, and a lack of prompt reporting at the onset of serious allergic symptoms.3 The research team also identified additional areas in need of improvement which included detailed patient education regarding food allergy; appropriate SIE prescription, education on its use, and compliance with self-carry; patient instruction on ingredient inquiries; and avoidance of consuming desserts prepared away from home.3 In 2010, Kewalramani and Bollinger reported on the impact of food allergy and asthma.4 Due to the atopic march, it is not uncommon to see food allergy and asthma coexisting within patients and each condition can negatively affect the other.4 As previously noted, food allergic patients with asthma are at higher risk of FIA. An asthmatic patient with food allergy may have higher rates of morbidity and mortality associated with the asthma.1,4 Kewalramani and Bollinger assert that all food allergic patients/families should be counseled on the risk of developing comorbid asthma.4 Asthma is a common risk factor in fatal FIA. Screening for uncontrolled asthma with appropriate alerting of health care providers is essential. These patients could also benefit from a greater understanding of risk recognition and learning to differentiate between symptoms/treatment related to asthma versus a food-induced allergic reaction. Patients/caregivers trying to comply with asthma action plans and food allergy action plans (FAAP) may become understandably overwhelmed by such responsibilities. The FAE should collaborate with asthma educators to address the multifaceted and serious educational needs inherent in successfully managing both conditions.

Developmental Considerations in Young Children The developmental stage of a pediatric patient can influence food allergy risks, symptom perception, and the emotional impact of the diagnosis. Infants and young children are increasingly being diagnosed with food allergy. Subsequently, many families will indicate that the diagnosis significantly disrupts daily activities including meal preparations, family social activities, stress levels, and school attendance.5 In 2010, Houle et al reported on a developmental, community, and psychosocial approach to food allergies in children.6 The primary responsibility of daily food allergy management in infants and young children is with the adult caregivers. Consequently, parents may report anxiety and poorer quality of life associated with the degree of vigilance needed for food selection, meal preparation, and concerns related to the level of food allergy preparedness in child care facilities.6 The authors assert that parents and caregivers should be aware of how infants and young children may present with a food allergy reaction as these younger patients lack the language ability to 163

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communicate initial signs and symptoms.6 Caregivers should be alert to visible signs of a reaction such as urticaria, eczema, or facial edema. These younger children may exhibit early adverse reactions to food by spitting it out, refusing to eat it, and/or by pulling or scratching at their tongues. Young children may also experience immediate emesis or coughing as initial symptoms of a food allergic reaction.6 In school-age children, most food-induced allergic reactions involve egg, milk, shellfish, and nuts, although caregivers may also see reactions to less common food allergens such as wheat, chickpea, sunflower seeds, or sesame seeds.6 Houle et al point out that given the cultural diversity in many communities, school staff may also be expected to handle food allergies to certain ethnic foods that may be less common in their geographic area (eg, lentil or legume allergies in Asian Indian children).6 The authors also specify that while school-age children have more advanced communication skills than those younger, recognizing symptoms of an allergic reaction to food may be misinterpreted by the child and adult.6 In 2011, Fenton et al studied risk perception in children and adolescents with food allergy through an analytical framework that included illustrative techniques.7 Twenty children participated with ages from 7 to 17. Seven children were allergic to a single food, while 13 had multiple food allergies. Primary food allergens included peanut (more than 60% of participants), tree nuts, sesame, egg, shellfish, fish, and milk. The average age at diagnosis was 2.8 years, and more than 55% of the children reported having a food-induced allergic reaction after diagnosis. The school-age children had concerns surrounding environmental barriers to safety, coping strategies, and the emotional burden of responsibility. They defined social exclusion as missing out on school activities, being deprived of time with friends, or being singled out. Elementary schools were viewed as safer environments because of consistent school personnel, daily routines, and a stronger presence of parents.7 These children managed by avoiding risky foods, educating others, or escaping from unsafe places. They primarily coped with risks at school through greater dependence on parents. The authors point out that the emotional burden for younger children was lightened by parents who had internalized their child’s allergy and took on the dominant role in food allergy management. The younger children described feelings such as annoyance, sadness, and fear about their food allergy and they coped by seeking parental support.7 The findings of these articles underscore the need for FAEs to have a heightened understanding of how developmental stages of children influence their perception of food allergy risks, reactions, coping styles, and challenges with self-control. Education sessions with caregivers should include information on variations in symptom communication, recognition and interactive dialogue on social challenges, and effective interventions. Identification of stressors within the family with appropriate referrals to social workers, dieticians, mental health professionals, and community resources should occur as needed. 164

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Developmental Considerations in Adolescents Adolescence is a period of transition involving greater selfmanagement of chronic health conditions. As teens enter high school, they become more self-aware of their bodies and become involved in more independent activities.7 Since fatal FIA reactions are most common among teens and young adults, it is vital for the FAE to understand aspects of this developmental stage that influence risk taking behavior. In 2006, Sampson et al reported on risk taking and coping strategies of adolescents and young adults with food allergy.8 Of 174 participants that completed an Internet-based questionnaire, 75% had peanut allergy, 75% had multiple food allergies, and 87% had been prescribed SIE. When queried on risk-taking behaviors, 61% reported that they always carry SIE but that frequency varied by activities (eg, more so when traveling or with outings to restaurants; less so at friends’ homes, school dances, or sports). Alarmingly, 54% indicated that they purposefully ingested a known unsafe food allergen. Forty-two percent were willing to eat a food with an ingredient label that indicated it `may contain’ their known food allergen culprit. Ironically, while 60% told friends about their food allergy on an inconsistent basis, 68% think educating friends would make living with a food allergy easier.8 Areas of concern included teens’ misperception of anaphylaxis, low rate of SIE use, emotional risk factors, and poor communication of allergy to friends. The authors concluded that adolescent risk-taking behavior varies by social circumstances and perceived risks. Additionally, that while teens may be disinclined to educate peers themselves, having their friends informed by others may provide additional safety measures.8 Findings by Fenton et al reveal that prominent themes of food allergic adolescents involved balancing responsibilities and redefining normal.7 Many teens with food allergies viewed high schools as less protected environments compared with their elementary schools due to structural differences (eg, common eating spaces, unsupervised lunch areas) and uninformed school personnel. Adolescents tended to fend for themselves, often alone. In uncertain situations, food allergic teens perceived their vigilant patterns of behavior as stemming from fear. They felt keenly aware of their surroundings and on alert. Food allergic adolescents described their feelings in unsafe situations as embarrassment, fear, and anxiety. All the teens described their food allergy as a “big deal” because it was “life or death.” Teens who engaged in risk-taking behaviors were less absorbed in fear. Redefining normal was easier for adolescents who practiced self-advocacy and were able to come to terms with a new social identity with severe food allergies.7 The FAE’s approach to food allergic teens should include screening for risk–taking behavior, identifying any social and emotional challenges during this stage, comfort levels with self-advocacy, and coping strategies (eg, adaptive versus maladaptive). Ample time should be included in sessions for the FAE to evaluate return demonstration of medical devices,

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exploration of how the patient self-carries SIE, and emphasis on the need to consistently self-carry SIE. The FAE ought to also include teach-back evaluations of the FAAP, including symptom recognition of anaphylaxis and the need for prompt treatment. Frank discussion regarding the potential life-threatening consequences to risk-taking behaviors (eg, impaired judgment of food consumed if under the influence of alcohol) should occur. A review of common social scenarios with interactive dialogue of constructive means of handling the situations may be beneficial. The FAE may offer to provide food allergy educational sessions to high school and college personnel, work place staff, and/or peers of the patient. Referrals to social workers and mental health professionals should be determined on a case-by-case basis. Suggested Web resources for food allergic teens and young adult peer-to-peer mentoring and support include FAAN at www.foodallergy.org and the Why Risk It Web site at www.whyriskit.ca.

Clinical Presentation of FIA A clinical feature of anaphylaxis is that it generally involves more than one organ system. The FAE will need sufficient time to review the signs/symptoms of FIA with patients and caregivers. In the National Institute of Allergy and Infectious Disease (NIAID)–sponsored guidelines for the diagnosis and management of food allergy in the United States, signs and symptoms of anaphylaxis include the following1: · Cutaneous symptoms—Occur in the majority of patients, and include flushing, pruritus, urticaria, and angioedema. However, 10% to 20% of cases have no cutaneous manifestations. · Respiratory symptoms—Occur in up to 70% of cases, and include nasal congestion and rhinorrhea, throat pruritus and laryngeal edema, stridor, choking, wheeze, cough, and dyspnea. · Gastrointestinal (GI) symptoms—Occur in up to 40% of cases, and include cramping, abdominal pain, nausea, emesis, and diarrhea. · Cardiovascular symptoms—Occur in up to 35% of cases, and include dizziness, tachycardia, hypotension, and hypotonia. · Other symptoms—May include anxiety, mental confusion, lethargy, and seizures.1

Concurrent Steps with FIA · Elimination of further allergen exposure · Intramuscular (IM) injection of epinephrine · Call to 911 for ambulance patient transport to an emergency room (ER)1 Emergency medical technicians should be informed of the SIE dosing frequency on arrival to the rescue site. It is prudent

to have 2 units of SIE available in the home, daycare center, school, and/or relative’s home. Additionally, should there be an error when injecting the first unit of SIE (eg, the rescuer injects his thumb vs the patient), then a second dose is accessible. Adjunctive treatment for anaphylaxis in an outpatient setting may also includes use of bronchodilators, antihistamines, supplemental oxygen therapy, intravenous (IV) fluids (eg, with hypotension, orthostasis, or deficient response to intramuscular [IM] epinephrine), and positioning (eg, if tolerated, patient is placed in recumbent position with elevation of lower extremities).1

SAFE The FAE should be aware that after ER treatment for anaphylaxis, patient discharge discussions by health care professionals may include information about subsequent necessary actions. The NIAID-sponsored guidelines for the diagnosis and management of food allergy in the United States described the mnemonic “SAFE” as having been developed to remind health care professionals of basic measures suggested for these patients. The SAFE recommendations include the following: Seek support, Allergen identification and avoidance, Follow-up with specialty care, Epinephrine for Emergencies.1

Fundamental Teaching Points Regarding Anaphylaxis The FAE expands on information shared during discharge instructions from an ER following anaphylaxis. Examples of key patient education points regarding FIA include the following: · Anaphylaxis involves massive release of chemicals, which cause subsequent symptoms during this inflammatory response. · Anaphylaxis can be unpredictable in its progression and severity. · Anaphylaxis is a potentially life-threatening medical emergency that could become biphasic or protracted, underscoring the need for immediate treatment with epinephrine and transport of the patient to the nearest ER for further evaluation, management, and observation. · Patients may stay up to 6 hours for observation in an ER, even if stable after initial treatment. · If anaphylaxis is severe or refractory to treatment, prolonged observation time or hospital admission may be necessary.5 See Table 1 for a comprehensive listing of suggested key teaching points regarding FIA that an FAE may consider emphasizing after a diagnosis of life-threatening food allergy.

Self-Injectable Epinephrine Teaching points regarding outpatient treatment include epinephrine as the first line of defense, oral liquid antihistamines (eg, more readily absorbed if the patient 165

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Table 1. Food-Induced Anaphylaxis: Initial Key Teaching Points1,3,4,10,11 Understanding Food-Induced Anaphylaxis Definition: A serious allergic reaction that is rapid in onset and may cause death. Physiological reaction involves massive release of chemicals leading to inflammation and subsequent signs and symptoms. FIA is always a life-threatening medical emergency requiring immediate treatment with injectable epinephrine, urgently followed by ambulance transport to the nearest emergency room.

Managing Food-Induced Anaphylaxis Interactive review of patient specific FAAP with all caregivers. All caregivers of children with FIA should be instructed on food allergen triggers, risk reduction tactics, the life-threatening nature of FIA, symptom recognition, implementation of the FAAP, and correct use of SIE. A board-certified allergist will determine if the patient’s allergy to a specific food has resolved. Families should not offer a child known food allergens at home to find out if they have outgrown the allergy. Once suspected resolution is established by the allergist, further testing (eg, open food challenges) are done in an allergy office under strictly controlled conditions with access to medications and equipment necessary to treat FIA should it occur. Patients with a history of FIA will always be at risk of experiencing anaphylaxis in the future without trigger identification and subsequent strict avoidance of the offending allergen. Evaluation by a board-certified allergist is crucial to definitive diagnosis and trigger identification. The coexistence of asthma and food allergy puts the patient at higher risk for severe FIA.

Symptoms and Treatment Signs and symptoms of FIA include the following: flushing, pruritus, urticaria, angioedema, nasal congestion, rhinorrhea, throat pruritus, laryngeal edema, stridor, choking, wheeze, cough, dyspnea, cramping, abdominal pain, nausea, emesis, diarrhea, dizziness, tachycardia, hypotension, hypotonia, anxiety, mental confusion, lethargy, and seizures. FIA may be unpredictable in its severity and progression. Distinct clinical feature of FIA: it involves more than one organ system. Patients may not experience cutaneous symptoms with FIA. FIA can be uniphasic, biphasic, or protracted—requiring medical evaluation and observation. Once an episode of FIA occurs, symptoms may recur up to 3 days. Patients of all ages who are experiencing FIA typically require assistance in treating their anaphylaxis. Self-carry of SIE does not necessarily mean the patient can self-inject or activate the emergency medical system in the midst of anaphylaxis. Fatalities due to FIA are commonly associated with peanut or tree nut consumption and often involve delayed use of epinephrine or improper dosing of this medication. Abbreviations: FIA, food-induced anaphylaxis; SIE, self-injectable epinephrine; FAAP, food allergy action plan.

is conscious and can adequately swallow in the absence of edema of the tongue, throat, neck), and emergency transport to the closest ER for observation and treatment by medical professionals.9 When the latter point is emphasized, it frequently thwarts caregivers from assuming that SIE administration is sufficient treatment—especially when the patient may look symptom free within minutes of receiving the medication. SIE is available by prescription from several manufacturers. A patient’s weight of 10 to 25 kg requires a 0.15 mg

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epinephrine autoinjector, while the 0.3 mg form is used for patients weighing more than 25 kg. If using a 1:1000 solution of epinephrine IM, dosing is 0.01 mg/kg per dose with a maximum dose of 0.5 mg per dose.1 Patients who should be prescribed an SIE include those experiencing anaphylaxis, those with a history of a systemic allergic reaction, those with concomitant food allergy and asthma, and those with an allergy to peanut, tree nut, fish, and/or crustacean shellfish.1 Additionally, since it is impossible to predict whether anyone with an IgE-mediated food allergy will have anaphylaxis on a subsequent exposure, health care providers should consider SIE prescriptions for these patients as well.1

Fundamental Teaching Points Regarding SIE · Epinephrine counteracts the inflammatory aspects of anaphylaxis by acting as a bronchodilator and vasoconstrictor (eg, opens airways and increases blood pressure). · Administer SIE into the anterior-lateral (eg, outer) thigh muscle and not in the buttock. · Better patient outcomes are associated with how swiftly epinephrine is administered once a severe allergic reaction is identified.1 · If symptoms return after a first injection of epinephrine and the ambulance has not arrived yet, a second SIE may be given within 5 to 15 minutes.1 · Common expected side effects of epinephrine that occur at recommended dosing include agitation, anxiety, tremulousness, headache, dizziness, pallor, or palpitations/tachycardia.10 See Table 2 for a listing of suggested SIE key teaching points to review with a newly diagnosed patient/family.

Storage and Quick Access of SIE Information on the proper storage and need for easy access of SIE should be included in patient education sessions. · Store the SIE at room temperature (eg, 77°F, 25°C). Avoid storing SIE in locations with direct sunlight or excessive heat/cold (eg, avoid leaving SIE in the glove compartment of a car or in a refrigerator) to avoid degradation of the medication.11 · The number of doses per one SIE auto injector is product dependent. · Stress that the medication may be less effective once past its marked expiration date.11 · Reminder prompts for renewing expired SIE include patient completion of the automated renewal registration form included in SIE package inserts and manufacturer Web sites, reminder letters from pharmacies participating in SIE refill notifications, and screening for prescription refill needs at annual visits to primary care and/or

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specialty medical offices. · Families need to be responsible for being sure that day care centers and schools have unexpired SIEs on hand for emergency use. The SIEs should be stored in unlocked locations that are easily accessible by caregivers trained in anaphylaxis rescue. Table 2 presents a summary of suggested key teaching points regarding SIE after a diagnosis of FIA.

Medical Identification Patient education should also underscore the benefits of the use of medical identification jewelry or wallet cards that identify allergen triggers and history of FIA. Parents should seriously consider having their child begin wearing medical identification as early as safely possible, even before preschool age, so it becomes a routine part of their care. Early use of medical identification items may minimize resistance to wearing it for the first time as a school age child or adolescent. These are critical items that health care professionals and emergency medical technicians will look for to gain crucial patient health information during a medical emergency (eg, patient is unconscious and unable to speak for themselves). The Medic Alert Foundation, at www.medicalert.org, provides information, services, and a variety of medical identification jewelry for purchase.11,12 Additionally, information about other allergy-related businesses that manufacture wallet cards, medical identifying clothing, and waist packs are available through FAAN (www.foodallergy.org) and the Food Allergy Initiative (FAI) at www.foodallergyinitiative.org.

Food Allergy Training in Schools Studies of children with food allergy reveal that 16% to 18% have experienced a reaction in school.13 Twenty-five percent of children may also have their first allergic reaction to a food or be treated for anaphylaxis in a school setting.13 Fatalities in school-aged children in the United States have been associated with peanuts, tree nuts, milk, and seafood, but overall, anaphylaxis and death are rare in this age group.13 While it is beyond the scope of this article to address the multiple issues and planning stages necessary to safely accommodate food allergic children in schools, it should be noted that it requires a concerted effort by the family, school staff, and health care professionals. School anaphylaxis training is often provided by district school nurses and/or health care professionals from the primary pediatric or specialty medical office. Training optimally occurs immediately prior to the academic year with periodic refresher training at a minimum of once in the ensuing 6 months. Anaphylaxis drills and/or refresher training after the winter and spring holiday breaks is beneficial. School celebrations and field trips are critical times when accidental food allergy exposures can occur and these special events offer another opportunity for refresher training as needed. Parents should be encouraged

Table 2. Self-Injectable Epinephrine: Initial Key Teaching Points1,2,10,11 Using Self-Injectable Epinephrine Epinephrine is a medication that acts as a bronchodilator and vasoconstrictor. It is used to counteract the effects of FIA by opening the airways and increasing blood pressure. SIE should be administered immediately on identification of signs of FIA, optimally while a fellow rescuer calls 911 to activate the EMS system. Delayed use of SIE is associated with worse outcomes. SIE should be administered in the outer thigh muscle—not IV or in the buttock. SIE may be given through clothing if necessary. SIE administration buys time to get the patient to the emergency room. Anticipated side effects of epinephrine include the following: agitation, anxiety, tremulousness, headache, dizziness, pallor, or palpitations/ tachycardia. Side effects usually last only minutes with rest.

Seeking Medical Attention Even if the patient looks fine within minutes of receiving the SIE, the EMS system must still be activated by calling 911 with ambulance transport to an emergency room. If signs/symptoms of FIA return after an initial injection of epinephrine, rescuers can administer a second dose within 5 to 15 minutes while awaiting an ambulance.

Training Demonstrate steps using the SIE based on manufacturer directives. Patient/caregiver should provide accurate return demonstration at initial and ongoing office visits. Encourage patients/caregivers to visit the SIE manufacturer Web sites, which contain videos on the use of SIE and other helpful information for periodic home/school practice sessions. SIE trainers that do not contain the medication are useful for initial, annual, and periodic refresher sessions. Expired SIEs can be saved and used for practice sessions into oranges. A common error in the use of SIE is not holding it in place long enough for the full dose to be injected.

Storage and Preparedness The SIE must be accessible to a patient with a history of FIA wherever they go. Caregivers should routinely check SIEs to be sure the liquid inside the device is clear and not cloudy or discolored. However, degradation of the medication may occur without discoloration or precipitation. Caregivers should routinely check SIEs for the marked expiration date. Prescription renewals are needed to keep unexpired SIEs available. Renewal reminder prompts include patient completion of registration information in the SIE package insert cards or on manufacturer Web sites. Pharmacies may also offer autorenewals. Information on SIE medication carriers is available from FAAN and FAI. SIEs should be stored at room temperature with avoidance of excessive heat, cold, and light. SIEs should not be stored in car glove compartments or refrigerators. Families can contact their local EMS department to explore whether they can “red-flag” their home/school address on its computer system in the event of a 911 call for that patient. Patients with food allergy should wear medical identification jewelry or carry wallet cards with information regarding allergen triggers, comorbidities, or history of FIA. Screen for adequate numbers of SIEs based on family needs. Abbreviations: FIA, food induced anaphylaxis; SIE, self-injectable epinephrine; EMS, emergency medical system; FAAN, Food Allergy & Anaphylaxis Network; FAI, Food Allergy Initiative.

to ensure that all necessary paperwork involving FAAPs and school administration/storage of medications are completed by the pediatric and/or specialty medical office prior to the academic year. 167

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Self-Carry of SIE in Schools Almost every state currently has legislation that allows students to self-carry and potentially self-administer their prescribed SIE at school.14 States may differ in whether this coverage includes all school-sponsored activities on and/or off school property—including school-provided transportation. Schools, parents, and health care team members can learn more about their state legal coverage regarding self-carry of epinephrine by contacting the Legislative Action Center of FAAN at www.foodallergy.org.14,15 In general, 8 years of age is typical for students to begin selfcarrying SIEs; however, this determination is made on a caseby-case basis between the parents/caregivers, school nurse, administrator, and members of the health care team. A sticking point that may require clarification is that self-carry does not always mean the child can be expected to self-administer injectable epinephrine in the event of anaphylaxis. It does, however, increase the immediate access to this life-saving drug by school staff who have received anaphylaxis training.

SIE Education in Schools and Clinics Injectable epinephrine is available by prescription as autoinjectors.10,11 Manufacturers of each form of SIE have administration steps available in package inserts whereby use must be taught accordingly. In a medical office, learning to administer SIE should be covered in depth at initial office visits and then periodically thereafter—to include return demonstration by all caregivers present. Demonstrating how to use SIE devices can be done one on one and/or in a group setting. Optimally, patients/caregivers should receive verbal and written instruction and a DVD.1,11 Patients can also be directed to the Web sites of the manufacturers, which may include videos demonstrating the use of these SIEs. In addition, hands-on practice using an expired SIE into an orange is often an engaging way to give trainees a firmer sense of mastery at this new undertaking. A non–medically trained individual may have anxiety related to the responsibility of administering SIE—especially if they have never given an injection. Furthermore, they are being expected to administer an injection during anaphylaxis—a medical emergency. Therefore, it is a reasonable expectation that trainees may have a heightened sense of trepidation and patient educators should be sensitive to this innate response. However, anyone that will be responsible for caring for a child with food allergy should have a keen understanding of the patient’s food allergen triggers, risk reduction tactics, the lifethreatening nature of anaphylaxis, and correct use of the SIE. Evaluating the results of teaching EpiPen use in an allergy clinic has been studied by Huang et al.16 They studied a sample of 224 pediatric patients with a history of anaphylaxis. Parents were taught use of an EpiPen and tested on skill recall at follow-up office visits. Findings included the following: 22% passed on the first visit, 68% passed on the second visit, 94% passed on the third visit, and 6.5% failed after 5 tries.16 This research team found that 2 common omissions were forgetting to press the injector into the thigh until hearing the click and 168

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to hold it in place for 10 seconds.16 This study underscores the need for clinic models to include sufficient patient education time for initial in-depth instruction with follow-up reinforcement interactive sessions.

SIE Device Design as Factor in Compliance Various factors affect the use, underuse, nonuse, or misuse of SIE. One such element refers to the device itself. A complicating factor in clinical evaluation of medication compliance and the proper use of SIE includes the design of the device. A device’s ease-of-use (or lack thereof) is directly related to the ease with which patients learn how to operate the device and how long they can retain this knowledge before it begins to decay without refresher training. Ease-ofuse may not correlate with first impressions. For instance, a simple-looking device may be extremely difficult to learn how to use.17 The field of human factors engineering, which is concerned with how to design things so that they are intuitive and easy to use, is increasingly being adopted in health care to improve safety of patients and health care workers. In the area of food allergy, human factors engineering is being used to evaluate usability of autoinjectors as well as to design medication delivery devices so that they are easy to use.17 Some collaboration with the field of human factors engineering could benefit how patient education materials (including FAAPS) are designed such that they are easy to read and understand, thereby maximizing learning and knowledge retention by newly diagnosed patients/caregivers. Portability issues surrounding autoinjectors have an effect on the readiness of the patient to manage an allergic reaction when it occurs. Ease of portability is determined by the size and shape of a device. Since SIE devices tend to be larger and bulkier than a pencil, it can become cumbersome to self-carry. Preteen and adolescent male patients who self-carry using conspicuous belt loop carriers may balk at doing so. Patient perception of the operability and portability of epinephrine autoinjectors may be a significant factor in their compliance and proper use of this medication.18 Another task that families contend with is developing strategies to remind themselves to carry the injectable epinephrine with them when leaving their home. Once older children begin to self-carry, further reminder cues need to be developed. This is an area that should be assessed when providing refresher training with patients/families. Many older children and adolescents respond well to incentives as motivators to remind themselves to self-carry their autoinjectors. In this age range, patients also need to be reminded that food is often integral to group activities with inherent risks for accidental exposures. Thus, older children and teens need to understand the serious purpose for always carrying their SIE, including at social events.19

Caregiver Empowerment and Comfort Levels as Factors in SIE Use Additional factors contributing to the proper compliance and use of SIE is the level of mastery and empowerment that adult

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caregivers feel regarding the prospect of using the autoinjector and accurately assessing symptoms of an allergic reaction. In 2005, Kim et al explored whether underuse of the EpiPen, one form of injectable epinephrine, might be influenced by parental discomfort with administration due to a lack of feeling empowered and knowledgeable about the proper use of the SIE.20 Surveys were completed by 165 parents of physiciandiagnosed children with food allergy. The questionnaire included information regarding medical history, prior history of anaphylaxis, past experience with EpiPen use, and knowledge of indications for its use (eg, symptom assessment, technical steps needed to use the EpiPen, and actions taken after administration). Survey responses, typically completed by the mother (98%), indicated that the children were 1 to 19 years of age with the majority male and under the age of 5. Anaphylaxis was reported in 42% of the children. Fourteen parents (8%) reported administering the EpiPen to their child.20 The most common reason cited for not using the SIE was use of antihistamines instead (71%) and miscalculation of the seriousness of the reaction (50%).20 Peanut was the most common food allergen reported (85%). Of the 137 parents that indicated they had received EpiPen training, 109 were educated with an EpiPen trainer. Only 48% of the parents stated that they had reviewed EpiPen administration within the previous 12 months with a nurse or physician. Seventy-eight percent of the parents carried the EpiPen with them always or almost always, while 7% reported hardly ever having it with them. More than 75% of the parents were able to identify most laryngeal or respiratory symptoms of anaphylaxis, although less than 50% cited hoarseness or repetitive cough as symptoms. One quarter of the parents cited urticaria as a symptom of anaphylaxis. The vast majority of the parents correctly answered questions regarding the technical use of the EpiPen. Most parents (77%) correctly responded that they would “call 911” after SIE administration, while 65% would “go to the emergency department.”20 Reasons parents gave for being uncomfortable with SIE administration included the inability to accurately recognize symptoms of anaphylaxis, fear of hurting their child, and fear of forgetting how to use the device during a stressful, highpressure circumstance.20 Physicians (47%) and nurses (36%) were the professionals providing initial patient education. The researchers concluded that training parents on use of SIE is an important element in improving parental comfort level in treating their child. They recommend use of the placebo trainer as a tactile and visual tool for demonstration. Finally, return demonstration of SIE use during follow-up clinic visits is suggested to reinforce correct technique and promote discussion. Parental comfort with EpiPen use correlated the strongest with their sense of empowerment.20 This study underscores the significance of comprehensive and thorough patient education for newly diagnosed patients and the need for ongoing educational evaluation and support. Encouraging adult caregivers and older patients to have periodic “anaphylaxis drills” in the home with practice sessions

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including SIE review using a placebo trainer may also serve to increase device familiarity, comfort levels, and therefore further mastery with use of the device.

Additional Factors Affecting SIE Use The nature of accidental exposure to food allergens and the potential for anaphylaxis is unpredictable. However, SIE must be available to the food allergic patient at all times and necessitates proper training in its use. Yet, additional problems associated with SIE use may include potential barriers to compliance. Such obstacles may incorporate needle phobia, incorrect self-administration technique, mistaken route of administration, outdated SIEs, needle-stick injury, and unintentional self-injection.21,22 Unintentional self-injection is a common mistake during SIE use.22 Attempting to inject with the wrong end of the autoinjector after removal of the safety cap may lead to unintentional self-injection injury.22 Bakirtas et al observed that improved safety of use and simplicity of SIE device design would influence patient compliance and proper use by increasing comprehension and decreasing anxiety and fear related to utilization of the autoinjector.22 Additional reasons for reluctant use of SIEs may include failure to recognize symptoms of anaphylaxis, spontaneous recovery from previous episodes, erroneously assuming the episode is mild, reliance on oral H1 antihistamines or asthma-relief inhalers (eg, albuterol), lack of available SIE, and concerns regarding the possible side effects of the epinephrine.11 In 2000, Sicherer et al reported on use assessment of selfadministered epinephrine among food allergic children and pediatricians.23 They analyzed data from structured questionnaires given to 101 families, completed by parents (6.4 was the mean age of children) or food allergic teens and 29 attending pediatricians. Findings included that only 55% of the families had unexpired epinephrine available at the time of the survey. Of those with children in school, 77% had SIE available in school and 81% reported that the school understood the indications for its use. Of further significance, only 32% of the participants were able to correctly demonstrate the use of the SIE device. Of the 29 pediatricians (mean of 14 years in practice and mean of 4 epinephrine prescriptions per year), only 24% gave patients written information on indications for SIE use. Only 18% of the attending pediatricians were familiar with and able to correctly demonstrate use of at least one form of SIE with 21% properly showing use of the EpiPen.23 This study is noteworthy in that it reveals a significant percentage of caregivers and food allergic teens that cannot properly administer SIE and may not even have it accessible. In turn, the majority of pediatricians were unfamiliar with the proper use of SIE, which may heavily influence their ability to review its use with patients. Justifiably, Sicherer et al call for improved education of patients and physicians on proper use and indications for SIE.23 Adolescents are at highest risk for fatal FIA.1,13 Therefore, food allergic teens and their peers require education on risk reduction strategies and encouragement to always carry their SIE and use as needed.13 169

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Markland et al observed that teens had a strong tendency to want to normalize the experience of being food allergic.24 Emotions regarding FIA, especially among those who recall respiratory difficulties with previous reactions, may include anxiety and anguish. While many teens understand the reason for carrying SIE, which may help moderate fears, there may still be apprehension regarding having to use the medicine.24 Based on the experience of the authors, adolescent responses to living with food hypersensitivities can result in contradictory behavior, which is not unexpected given this developmental stage. Some teens may avoid disclosing any information regarding their food allergy due to factors such as natural shyness, embarrassment, a sense of shame, or concern over being perceived as different. Adolescents who enjoy group learning activities may benefit from interactive clinic classes with other food allergic teens. In this setting, multidisciplinary team members can cover diverse topics such as avoidance strategies at social events, role-playing common social scenarios (eg, dating, school trips), peer-to-peer mentoring, common self-management issues, concerns related to SIE use, and selfadvocacy tips. Adolescent food allergic patients may also wish to invite their nonfood allergic peers to these classes, which would ease their burden of having to educate others. Clinic physicians and nurses might also provide ongoing community outreach educational sessions to local schools, camps, and places of worship to increase awareness in the community surrounding the adolescents.

Conclusion This article, together with Part 1 of the series, offered a broad overview of significant topics frequently addressed by FAEs and research data to support suggested educational interventions. The authors emphasize that to gain a fuller perspective on the informational needs and subsequent suggested patient education for the newly diagnosed food hypersensitive pediatric patient, the content of both articles in this series should be read. An interdisciplinary team approach to these patients/families may enhance the quality and effectiveness of health care services. The role of a qualified health care professional as FAE is vital to the provision of evidenced-based education for patients facing acute and chronic challenges devoid of any current scientifically proven cure. The newly diagnosed food allergic patient/family at risk of anaphylaxis requires extensive education covering topics that include food allergen avoidance, reading ingredient labels, cross-contact concerns, the food allergy action plan, recognition of the signs/symptoms of anaphylaxis, use of SIE, and medical identification. Part 1 of this series included tables summarizing major food allergens, examples of foods containing those allergens, key teaching points for allergen avoidance, and selected Web resources. Part 2 of this series includes tables summarizing initial teaching points regarding FIA and SIE. These tables are not intended to reflect exhaustive listings. However, collectively they 170

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provide a suggested framework for the FAE to initiate vital patient education to be tailored on a case-by-case basis. While barriers to sufficient patient education services exist in clinic settings (eg, time constraints, role delineation, reimbursement issues), the very safety of this particular patient population is contingent on receiving comprehensive teaching. As proposed in Part 1 of this series, it is the collective view of the authors that licensed nurses (eg, RNs, BSNs, and APNs), who characteristically study health/patient education as part of their academic curriculums, be maximally used to provide patient education services within ambulatory care settings. In an outpatient practice setting, using creative business scheduling and model development, this licensed nursing professional could be hired on a part-time or consultant basis to provide case management, patient education services (eg, planned patient appointments, group class development/ implementation), and crafting of a food allergy program tailored to the clinic needs. A second suggestion is that a BSN or APN who provide a variety of clinic nursing services within their scope of practice, expand the percentage of time devoted to patient education and case management services for the food hypersensitive patient population. FAEs and nurse case managers also have a pivotal role in providing intensive educational follow-up, behavioral coaching, self-management mentoring, anticipatory guidance counseling, coordination of multidisciplinary services, community outreach education, and resource identification. As asserted in Part 1 of this series, further exploration and research is warranted regarding improved educational services and effects on patient outcomes, empowerment, experience, and satisfaction.

Acknowledgments The authors wish to thank the anonymous journal reviewers for providing exceptional feedback and suggestions on this two part series. We gratefully acknowledge the sharing of their expertise and thoughtful comments.

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8. Sampson M, Munoz-Furlong A, Sicherer S. Risk-taking and coping strategies of adolescents and young adults with food allergy. J Allergy Clin Immunol. 2006;117:1440-1445. 9. Sampson, H. Anaphylaxis and emergency treatment. Pediatrics. 2003;111:1601-1607. 10. Kemp S, Lockey R, Simons FE. Epinephrine: the drug of choice for anaphylaxis—a statement of the World Allergy Organization. Allergy. 2008;63:1061-1070. 11. Sicherer S, Simons FE. Self-injectable epinephrine for first aid management of anaphylaxis. Pediatrics. 2007;119:638-646. 12. Medic Alert Foundation. http//www.medicalert.org. Accessed July 13, 2011. 13. Sicherer S, Mahr T; American Academy of Pediatrics Section on Allergy and Immunology. Management of food allergy in the school setting. Pediatrics. 2010;126:1232-1240. 14. Young M, Munoz-Furlong A, Sicherer S. Management of food allergies in schools: a perspective for allergists. J Allergy Clin Immunol. 2009;124:175-182. 15. Food Allergy & Anaphylaxis Network. http://www.foodallergy.org/ page/legislation. Accessed July 13, 2011. 16. Huang S. Evaluating the results of teaching Epipen use in an allergy clinic. J Allergy Clin Immunol. 2005;115:S41.

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17. Gosbee LL. Nuts! I can’t figure out how to use my life-saving epinephrine auto-injector! Joint Comm J Qual Saf. 2004;30: 220-223. 18. Guerlain S, Hugine A, Wang L. A comparison of 4 epinephrine autoinjector deliver systems: usability and patient preference. Ann Allergy Asthma Immunol. 2010;104:172-177. 19. DunnGalvin A, Hourihane JB. Developmental trajectories in food allergy: a review. Adv Food Nutr Res. 2009;56:65-100. 20. Kim J, Sinacore J, Pongracic J. Parental use of Epipen for children with food allergies. J Allergy Clin Immunol. 2005;116: 164-168. 21. Frew A. What are the “ideal” features of an adrenaline (epinephrine) auto-injector in the treatment of anaphylaxis? Allergy. 2011;66:15-24. 22. Bakirtas A, Arga M, Catal F, Derinoz O, Demirsoy M, Turktas I. Make up of the epinephrine autoinjector: the effect on its use by untrained users. Pediatr Allergy Immunol. 2011;22:729-733. 23. Sicherer S, Forman J, Noone S. Use assessment of self-administered epinephrine among food-allergic children and pediatricians. Pediatrics. 2000;105:359-362. 24. Markland B, Wilde-Larsson B, Ahlstedt S, Nordstrom G. Adolescents’ experiences of being food-hypersensitive: a qualitative study. BMC Nurs. 2007;6(8):1-13.

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