Adolescence is a challenging developmental period associated with risky food allergy (FA) behaviors.1 Despite this, there are no behavioral interventions that promote successful FA self-management and satisfactory quality of life among affected youth; such an intervention is critically needed. To develop an evidence-based intervention, our research team utilized the ORBIT Model,2 a systematic, iterative approach created by the Obesity-Related Behavioral Intervention Trials consortium that includes (1) investigation of a clinical question, (2) development and evaluation of a pilot intervention, and (3) a randomized clinical trial to evaluate intervention efficacy. See Figure 1. We first conducted a multi-method study that showed youth with FA are frequently not adherent to FA management guidelines for allergen avoidance and emergency preparation3 and that a third of youth experienced FA-related bullying.4 Qualitative interviews revealed several themes: FA is a chronic burden that affects daily life, families experience anxiety about FA, find it challenging to transition FA management from parent to child, need to be prepared, and frequently advocate for their needs, and social experiences affect FA experiencse.5
Figure 1.
Development of the Food Allergy Mastery Program through the ORBIT Model2
Based on our findings, we propose that a behavioral intervention for youth with FA should: 1) provide FA education, 2) bolster stress and anxiety management, 3) assist parents in transitioning FA management responsibility to youth, 4) teach problem solving and advocacy skills, and 5) foster FA peer support. We created the Food Allergy Mastery (FAM) Program, a 6-session telehealth intervention for youth ages 10–14 and their caregiver that can be administered by a masters-level counselor in 3 months. Sessions are accompanied by a workbook that youth complete during sessions. Five 60-minute telehealth sessions are conducted with youth and caregiver together, with one-on-one time with the youth as appropriate. A sixth 60-minute telehealth session is a peer group session. Session content focuses on topics such as transitioning FA management tasks from caregivers to child, navigating social situations with peers, and differentiating symptoms of an allergic reaction from anxiety. See Figure 1 for intervention content details.
To assess the intervention, separate participants were recruited for focus groups and a pilot study. Youth ages 10–14 years, diagnosed by a physician with one of the top 9 IgE-mediated FAs for at least one year, who also had an epinephrine auto-injector prescription, and a caregiver, were recruited from pediatric FA clinics at a Mid-Atlantic academic medical center. Research assistants reviewed FA clinic schedules to assess for eligibility and then contacted families by phone, email, or in-person at clinic appointments to gauge interest. Informed consent was completed with caregivers and consent/assent with participants as appropriate. Study procedures were approved by the institution’s Institutional Review Board.
Twenty-one participants were contacted for focus group participation; of these, 6 could not be reached (28.6%), 2 declined (9.5%), 2 were interested but unable to participate (9.5%), 2 were interested but never consented (9.5%), and 9 consented (42.8%). Three 2-hour focus groups were conducted with the 9 youth (M age=11.67 years; 55% male; 33% White; 11% Hispanic/Latine) and a primary caregiver (89% mothers). Participants were allergic to tree nuts (88.9%), peanut (66.7%), sesame (44.4%), shellfish (22.2%), milk (11.1%), egg (11.1%), and wheat (11.1%). Dyads learned about FAM Program content, discussed the telehealth format, and provided opinions regarding the relevance and comprehensiveness of the intervention. Participants believed the session content was appropriate and relevant. They encouraged more focus on FA management in social situations and stress/anxiety management related to FA and emphasized that connection with FA peers was a highly desired component of the program. The FAM Program was revised based on this feedback. See Figure 1 for intervention revision details.
Thirty-eight participants were contacted for pilot study participation; of these, 18 could not be reached (47.4%), 7 declined (18.4%), 3 were interested but either did not complete consent or finish baseline questionnaires (7.9%), and 10 consented/completed baseline (26.3%). Thus, 10 additional dyads (Youth Mage=12.7 years; 70% male; 10% White; 10% Hispanic/Latine; 90% mothers) completed the 6-session FAM Program via Zoom with either a licensed psychologist or psychology intern with FA expertise. Biweekly sessions took place over 3 months. Participants were allergic to tree nuts (80.0%), peanut (60.0%), sesame (30.0%), shellfish (30.0%), milk (20.0%), egg (20.0%), and fish (10.0%). Participants completed the Food Allergy Knowledge Test (FAKT),6 the Food Allergy Self-Efficacy Scale (FASE),7 and the Multidimensional Scale of Perceived Social Support (MSPSS)8 at baseline and follow-up, and a post-program evaluation interview via telehealth.
Eight dyads completed all FAM Program sessions. Two dyads completed at least 1 FAM Program session, but one dropped out due to time constraints and the other because they were diagnosed with COVID-19. Youth who completed all six sessions rated the FAM Program as relevant and enjoyable on the post-program evaluation. We examined descriptive statistics for all measures at baseline and follow-up in order to identify changes across timepoints. Further statistical analyses were not conducted, as there was not the expectation of statistically significant differences between timepoints with a small sample size. Our goal was to inform future intervention refinement. Youths’ FA knowledge improved across three domains: allergen avoidance (Mean Baseline score=75% correct, SD=23; Mean Follow-up score=82% correct, SD=20), allergic reaction symptom recognition (Mean Baseline score=72% correct, SD=18; Mean Follow-up score=75% correct, SD=12), and allergic reaction treatment (Mean Baseline score=55% correct, SD=27; Mean Follow-up score=59% correct, SD=22). Social support ratings increased from baseline to follow-up (MSPSS Mean Baseline=5.02, SD=1.42, Mean Follow-up=5.70, SD=0.66, Possible Range=1–7). Overall FA self-efficacy remained stable, but there were improvements regarding recognizing and treating allergic reactions (FASE Mean Baseline=70, SD=25; Mean Follow-up=89, SD=12; Possible range=0–100).
FA management during adolescence is challenging and treatment options are limited. There are clearly identifiable domains that should be addressed to help support youth as they transition to independent FA management. The FAM Program is a promising intervention for youth with FA. A randomized clinical trial is needed to evaluate the impact of the FAM Program on primary outcomes of interest, such as FA knowledge, skills, behavior and psychosocial functioning, and distal outcomes of interest, such as healthcare utilization.
Acknowledgments
This study was funded by the National Institute of Allergy and Infectious Disease (K23AI130184) and a Bridge Award from Children’s National Hospital’s Children’s Research Institute.
Abbreviations:
- FA
food allergy
- FAKT
Food Allergy Knowledge Test
- FAM
Food Allergy Mastery Program
- FASE
Food Allergy Self-Efficacy Scale
- MSPSS
Multidimensional Scale of Perceived Social Support
- RA
research assistant
Footnotes
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