The Development of Age-Based Food Allergy Educational Handouts for Caregivers and Patients: A Work Group Report of the AAAAI Adverse Reactions to Foods Committee.

BACKGROUND: Food allergy education is an ongoing process that must address unique safety concerns and psychosocial challenges at each developmental stage. Families require reliable information that is targeted to specific developmental stages to support the integration of food allergy management into daily life. OBJECTIVE: The purpose of this project was to develop age-specific, evidence-based patient education handouts with practical recommendations for managing and coping with food allergies at different developmental stages. METHODS: Handout content was based on: (1) practice guidelines for food allergy management; (2) literature addressing psychosocial and educational needs of patients with food allergy and their caregivers; and (3) clinical experience of the project team. Fifty-seven caregivers of patients (aged 0-21 years) with food allergy and 2 young adults with food allergy reviewed a draft of the handouts and completed an online survey to assess handout acceptability and usability and identify areas for improvement. Handouts were revised based on participant feedback. RESULTS: The majority of participants (79%) rated the amount of information in the age-specific handouts as "just right," versus "not enough" (9%) or "too much" information (12%). Sixty-three percent reported that they would be "very likely" to use the handouts as a resource and 35% "somewhat likely." Almost all participants (88%-100% by item) agreed that the handouts used elements of plain language writing and clear communication. CONCLUSION: Caregivers rated the age-based food allergy education handouts as understandable and useful. We anticipate that these handouts could be used during health care visits and directly accessed online by families.

Improving patient education for atopic dermatitis: A randomized controlled trial of a caregiver handbook.

BACKGROUND/OBJECTIVES: Patient education is important to families' ability to manage and cope with pediatric atopic dermatitis (AD). We evaluated whether an educational handbook could improve AD symptoms, caregiver confidence in AD management skills, and AD-related quality of life. METHODS: Caregivers of children with AD ages 1 month to 16 years were randomly assigned to the intervention arm (handbook in addition to standard AD management) or the control arm (standard management alone). Caregivers completed self-report outcome questionnaires prior to a clinical visit for AD and at 3-month follow-up. RESULTS: 175 caregivers completed questionnaires at baseline and follow-up. AD symptoms measured by the Patient-Oriented Eczema Measure (POEM) improved in both the handbook and control arms. However, the decrease in the mean POEM score in the handbook arm (-4.4, 95% CI [-5.8, -3.0]) did not differ from that in the control arm (-3.4, 95% CI [-4.8, -2.03]; P = .343). Change in quality of life did not differ between study arms. Among caregivers attending a new patient visit for AD, mean confidence scores (measured from 0 to 100) increased more in the handbook arm (67 [95% CI {60, 74}] to 83 [95% CI {77, 88}]) relative to the control arm (74 [95% CI {65, 82}] to 75 [95% CI {67, 83}]; P = .012). The majority of caregivers rated the handbook as helpful in managing the child's AD. CONCLUSIONS: Despite an adequate sample size, the handbook did not improve AD symptoms more than standard management alone. The handbook improved confidence in management skills for families attending new patient visits for AD.

Multidisciplinary interventions in the management of atopic dermatitis.

Atopic dermatitis (AD) is the most common pediatric skin disease. AD has a significant effect on patient and family quality of life caused by intense pruritus, sleep disruption, dietary and nutritional concerns, and psychological stress associated with the disease and its management. Multidisciplinary approaches to AD care have been developed in appreciation of the complex interplay among biological, psychological, behavioral, and dietary factors that affect disease control and the wide range of knowledge, skills, and support that patients and families require to effectively manage and cope with this condition. Common components of multidisciplinary treatment approaches include medical evaluation and management by an AD specialist, education and nursing care, psychological and behavioral support, and nutritional assessment and guidance. Models of care include both clinical programs and structured educational groups provided as adjuncts to standard clinical care. Available evidence suggests beneficial effects of multidisciplinary interventions in improving disease severity and quality of life, particularly for patients with moderate-to-severe disease. Additional research is needed to identify the best candidates for the various multidisciplinary approaches and evaluate the cost-effectiveness of these programs.

Evaluating a handbook for parents of children with food allergy: a randomized clinical trial.

BACKGROUND: Educational materials are needed to support parent management of and coping with childhood food allergy. OBJECTIVES: To evaluate whether a food allergy handbook can improve parental knowledge, confidence, and quality of life associated with the management of food allergy. METHODS: Participants included 153 parents of children diagnosed as having food allergy within the past 12 months who were recruited from hospital-based allergy clinics and food allergy organizations. Parents were randomly assigned to receive the food allergy handbook either after a baseline survey (handbook group) or at the conclusion of study participation (control group). Outcomes were assessed using online surveys at baseline, 2-week follow-up, and 2-month follow-up. RESULTS: Compared with parents in the control group, parents in the handbook group had significantly greater improvement in knowledge at the 2-week (mean difference, 2.92; 95% confidence interval [CI], 2.20-3.64; P < .001) and 2-month (mean difference, 2.46; 95% CI, 1.68-3.25; P < .001) follow-ups, significantly greater improvement in confidence at the 2-week (mean difference, 0.24; 95% CI, 0.09-0.39; P = .002) and 2-month (mean difference, 0.47; 95% CI, 0.30-0.63; P < .001) follow-ups, and significantly greater improvement in quality of life at the 2-month follow-up (mean difference, -0.48; 95% CI, -0.79 to -0.16; P = .004). Parents reported satisfaction with the content the handbook, with mean ratings of individual sections ranging from 2.7 to 3.2 on a 0- to 4-point scale and modal ratings of 3 (very useful). CONCLUSIONS: The food allergy handbook evaluated in this study is an effective parent resource to supplement physician management of food allergy. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01914978.

A Review of Multidisciplinary Interventions in Atopic Dermatitis.

Multidisciplinary interventions have been developed for patients with atopic dermatitis (AD) and their families, with the aim of improving outcomes such as disease control, adherence, and quality of life. We reviewed the content of different multidisciplinary approaches to intervention for AD and evidence for their impact on key outcome measures. We also provided data from our multidisciplinary outpatient program for pediatric AD. Studies included in the review suggest benefits of multidisciplinary interventions as models of treatment or adjuncts to standard medical care, with a positive impact on outcomes including disease severity and itching/scratching. There were limitations to existing studies, including heterogeneous methods used to assess quality of life outcomes across studies and lack of controlled studies assessing the outcome of clinical care programs. Further research will be useful in assessing the impact of multidisciplinary interventions on important outcomes such as treatment adherence and sleep, identifying the elements of multidisciplinary interventions that are most critical for improved outcomes, and identifying the best candidates for multidisciplinary intervention approaches.

Assessment of psychological distress among children and adolescents with food allergy.

BACKGROUND: Youth with food allergy may experience psychosocial stressors including limitations in activities, differences from peers, and anxiety. Factors such as allergy-related medical history, children's attitudes toward their allergies, and parental anxiety may function as risk and resilience factors associated with psychological distress in this population. OBJECTIVE: To assess mean scores and rates of elevated scores on standardized measures of psychological distress among youth with food allergy and identify factors associated with distress. METHODS: A total of 141 mothers of children age 2 to 17 years with food allergy completed questionnaires about child medical history, child anxiety and depressive symptoms, and maternal anxiety symptoms. A total of 69 children age 8 to 17 years completed self-report measures of anxiety and depressive symptoms, social stress, and attitudes toward food allergy. RESULTS: Mean scores on self-report and parent-report measures of child anxiety symptoms, depressive symptoms, and social stress fell in the average range on standardized measures of child distress. Comparisons with normative scores generally indicated either no differences or lower rates of distress in our sample of youth with food allergy, with the exception of child-reported anxious coping and separation anxiety symptoms, which were significantly higher than normative scores. Maternal reports of child symptoms were significantly higher than child self-reports. Multiple regression analyses yielded models in which child attitudes toward food allergy and maternal anxiety were associated with child distress for children 8 to 17 years old. CONCLUSION: Results suggest targets for prevention of distress, including assessment of attitudes toward food allergy and support for parental anxiety management.

Evaluation of a group intervention for children with food allergy and their parents.

BACKGROUND: Children with food allergy and their parents may experience substantial stress related to the risk of serious reactions and the demands of allergy management. OBJECTIVE: To evaluate a group intervention for children with food allergy and their parents designed to increase parent-perceived competence in coping with food allergy and to decrease the parent-perceived burden associated with food allergy. METHODS: Sixty-one children aged 5 to 7 years with food allergy and their parents attended 1 of 4 half-day workshops, with parent and child groups run concurrently. Parents completed self-report measures of perceived competence in coping with food allergy at 3 time points: preworkshop (within 8 weeks of the intervention), postworkshop (immediately after the intervention), and follow-up (4-8 weeks after the intervention). Parents completed a measure of burden associated with food allergy at preworkshop and follow-up. Parents and children also completed evaluations of the study intervention. RESULTS: Parent-perceived competence in coping with food allergy increased significantly from preworkshop to postworkshop and follow-up, and parent-perceived burden associated with food allergy decreased from preworkshop to follow-up. Parent and child evaluations of the workshop were favorable. CONCLUSIONS: These findings provide preliminary support for the effectiveness and feasibility of a group intervention for children with food allergy and their parents and suggest the importance of controlled evaluations of group interventions in this population in the future.

Development of a preliminary questionnaire to assess parental response to children's food allergies.

BACKGROUND: Food allergy affects up to 8% of children. Unintentional exposure may result in minor to potentially fatal episodes. Management of allergies depends on strict allergen avoidance and emergency preparedness. The demands of allergy management and concerns for the child's safety may place parents at risk of developing emotional distress or difficulties in coping. OBJECTIVE: To develop a brief condition-specific measure to evaluate parental adjustment to and coping with children's food allergy. METHODS: A total of 221 parents of children 18 year or younger with food allergy were recruited from a private allergy practice and local food allergy support groups. Parents completed an 18-item questionnaire, the Food Allergy Parent Questionnaire (FAPQ), that assessed parental coping with a child's food allergy and questions related to their child's food allergy diagnosis and course. RESULTS: Factor analysis of the items on the FAPQ suggested 4 factors that accounted for 53.6% of the variance: parental anxiety/distress, psychosocial impact of allergies, parental coping/competence, and family support. Medical variables (greater number of food allergies, positive history of anaphylaxis) were associated with higher scores on the anxiety/distress and psychosocial impact subscales. Internal consistency was good for the anxiety/distress and psychosocial impact subscales (Cronbach alpha = .80 and .77, respectively) but lower for the parental coping/competence and family support subscales (alpha = .57 and .32, respectively). CONCLUSIONS: Although further psychometric data for the FAPQ is needed, preliminary findings suggest that the measure may be useful in screening for parental anxiety, perceived impact of food allergies, level of family support, and coping skills.