Piloting a multidisciplinary group education session to support caregivers of children with food protein–induced enterocolitis syndrome (FPIES)

Food protein–induced enterocolitis syndrome (FPIES) is a non–IgE-mediated food allergy that presents as delayed vomiting after culprit food ingestion, sometimes followed by diarrhea, in some cases progressing to shock.¹ Although FPIES often self-resolves during childhood, it carries significant medical and psychosocial implications.² Children with FPIES are at risk for pediatric feeding disorders, food aversions, inadequate nutrient intake, and poor growth. Feeding skill development may also be disrupted in infancy, when FPIES typically manifests.^3,4 Caregivers may experience anxiety due to a lack of diagnostic tests or evidence-based recommendations to guide food introduction, limited awareness of FPIES among health care providers, and challenges in identifying credible information to guide daily management and coping.^2,5–8 Encouragingly, higher caregiver self-efficacy for managing FPIES has been associated with reduced disease-related burden and distress,⁶ highlighting the importance of increased access to reliable information and resources to address families’ varied medical, nutritional, feeding, and psychosocial needs.

Here, we describe a virtual multidisciplinary group-based education program developed to enhance education and support for caregivers of young children with FPIES followed at Boston Children’s Hospital (BCH). This project was developed on the basis of clinical impressions of members of our project team that there was an unmet need for multidisciplinary collaboration to address the high level of caregiver psychosocial burden associated with FPIES management. A group-based model was chosen to facilitate connections and support among caregivers with similar experiences and concerns. Project objectives were to (1) pilot the group session and (2) assess caregiver experience with the session to inform future implementation of multidisciplinary interventions for families of children with FPIES. The project was determined to constitute a quality improvement activity by the BCH Department of Pediatrics Performance Excellence Group, with criteria developed in consultation with the BCH Institutional Review Board.

The educational session was designed to complement routine FPIES care provided by the child’s health care providers. Educational content was developed on the basis of professional practice guidelines,¹ published literature addressing the varied management and coping needs of patients and families, and clinical expertise of our project team (allergists, gastroenterologists, dietitian, speech-language pathologist, psychologist, social workers). Sessions were 90 minutes long and conducted via Zoom based on pandemic-related considerations and to accommodate families from a larger geographic area. Session format and content is summarized in Table I. FPIES resources handouts were developed to increase awareness of clinical services within our institution and resources from other trusted organizations (see Figure E1 in this article’s Online Repository at www.jaci-inpractice.org).

TABLE I.

Education session format and content

Content	Description
Introductions	● Session objectives, format, and confidentiality ● Provider introductions (ie, role in care of child with FPIES) ● Caregiver introductions (eg, child age, FPIES triggers, and goals for session)
Diagnosis & medical management (allergist ± gastroenterologist)	● FPIES phenotypes and diagnostic criteria ● FPIES food triggers ● Pathophysiology ● Management tools (ondansetron, emergency management plans) ● Natural history ● Oral food challenges ● Unmet needs in FPIES management and research
Question & answer session	● Questions/answers about presentation
Feeding needs (speech-language pathologist)	● Rationale for introduction to various textures and flavors of solids ● Texture progression when introducing solids within a limited diet ● Strategies for developing chewing skills, addressing sensory-based feeding difficulties, and managing behaviors related to feeding
Nutrition needs (dietitian)	● Rationale for introduction of solids ● Lower risk foods, iron-rich foods, suggestions for varying textures ● Label reading to avoid triggers
Psychosocial needs (psychologist)	● Impact of FPIES on quality of life ● Caregiver coping strategies/obtaining support ● Teaching young children about FPIES/developing routines
Facilitated discussion*	● Questions/answers about presentations ● Caregiver discussion (common challenges, practical tips)
Wrap-up	● Informational resources/handouts ● Process for completing online feedback survey

^*Breakout rooms used for facilitated discussion for 1 session with 13 participants (3 breakout rooms with 2–3 providers and 4–5 families per room).

Eligible families were identified on the basis of electronic medical record search of patients with FPIES International Classification of Diseases, Revision 10 code (K52.21) 2 years or younger seen in the BCH Allergy Clinic within the previous 3 months or identified as candidates via one of the multidisciplinary team providers. We conducted 5 sessions on Sunday afternoons from November 2021 through January 2023. Invitations to participate were emailed and caregivers from 42 of the 204 (20.6%) invited families attended 1 of the sessions (range 6–13 families/session). More than 1 caregiver per family could attend.

Following each session, attendees completed anonymous online surveys about their satisfaction with session content and format, preferences for further education/support programs, and clinical and demographic information. Survey responses were collected and managed using REDCap electronic data capture tools hosted at the BCH. Descriptive statistics were used to summarize data.

Caregivers from 29 of the 42 (69.0%) families attending the sessions completed postsession surveys. Each survey response represented a single family. Demographic and clinical characteristics of respondents are presented in Table E1 in this article’s Online Repository at www.jaci-inpractice.org. Most caregivers were White, non-Hispanic, highly educated mothers from high-income households. Child median age was 13 months, with median time since FPIES diagnosis 6 months. Most children (79.3%) were avoiding multiple food triggers. Before the session, most caregivers (86.2%) reported having met with an allergist for FPIES care.

Most caregivers reported that the overall session length and time dedicated to presentations and group questions/discussion were “just right” (Table II). However, more than one-third of the caregivers reported that the time allotted for questions/discussion was too short. Median rating of the usefulness of each of the presentations was 5.0 (1-not useful to 5-very useful). All caregivers reported that they would probably or definitely recommend the session to another caregiver.

TABLE II.

Participant feedback on FPIES multidisciplinary group education session (n = 29)

What do you think about the length of today’s session?	Too short 1	2	Just right 3	4	Too long 5
Full session	0%	17.2%	75.9%	6.9%	0%
Presentations	3.4%	3.4%	86.2%	6.9%	0%
Group questions and discussion	13.8%	24.1%	62.1%	0%	0%
What do you think about the number of participants?	Not enough 1	2	Just right 3	4	Too many 5
	6.9%	20.7%	69.0%	3.4%	0%
Would you recommend this group to another caregiver/parent?	Definitely not 1	Probably not 2	Unsure 3	Probably 4	Definitely 5
	0%	0%	0%	24.1%	75.9%
Please rate how useful you found each of the presentations?	Not at all useful 1	2	Somewhat useful 3	4	Very useful 5
Diagnosis/medical management	0%	6.9%	6.9%	31.0%	55.2%
Feeding needs	0%	3.4%	6.9%	37.9%	51.7%
Nutrition needs	0%	3.4%	3.4%	37.9%	55.2%
Psychosocial needs	0%	3.4%	10.3%	31.0%	55.2%
How likely you would be to attend FPIES sessions in the following formats?	Not at all likely 1	2	Somewhat likely 3	4	Very likely 5
Drop-in Zoom sessions	0%	0%	13.8%	31.0%	55.2%
Recurrent Zoom sessions	6.9%	3.4%	17.2%	34.5%	37.9%
Prerecorded sessions	3.4%	6.9%	24.1%	17.2%	48.3%
In-person sessions	17.2%	17.2%	20.7%	20.7%	24.1%

Participant responses to open-ended feedback questions were organized into themes. The most commonly valued elements of the sessions included access to comprehensive, multidisciplinary education (n = 10) and support from other caregivers with similar experiences/feeling less alone (n = 8). Recommendations to improve sessions included more time for discussion with other caregivers (n = 6), separate sessions or breakout rooms based on the child’s developmental stage and/or food triggers (n = 4), and ongoing, multisession support groups (n = 3). Caregivers also recommended that sessions be offered earlier in the course of the child’s diagnosis and be shared with emergency room and primary care providers to increase access to FPIES management information (n = 5).

Preliminary data from our pilot implementation of an education session for caregivers of children with FPIES indicate high levels of satisfaction with the comprehensive, multidisciplinary nature of information provided. Parent feedback points to the importance of emotional and practical support obtained from caregivers with similar experiences, supporting the use of group-based education sessions. An area of further study is whether attending virtual sessions led to increased utilization of available clinical resources for patients with FPIES at our institution.

Respondents were predominantly White, non-Hispanic, highly educated, high-income, and English-speaking mothers, which may limit the generalizability of our findings. We examined demographic characteristics of patients with FPIES followed in allergy clinics at our institution via a search of the electronic medical record. Similar to our project sample, patients with FPIES followed in clinics were primarily White (68.6%) and non-Hispanic (70.4%), although comparison to our project sample was limited by high rates of missing information in the medical record (19.9% and 23.8%, respectively). These demographic characteristics match what is reported in FPIES publications to date, describing predominantly non-Hispanic, White patients from higher socioeconomic status, suggesting underdiagnosis in vulnerable and underserved populations.² Lack of diversity in our sample may reflect challenges with our recruitment procedures and barriers to attending the virtual sessions and also raises important considerations in future research to identify and address broader disparities in access to FPIES diagnosis, education, and resources. Because we restricted our pilot population to families of children with FPIES 2 years or younger, session content will need to be modified to meet the support and educational needs of families and children at different ages.⁹

On the basis of findings from this pilot, we are taking steps to support earlier, broader access to multidisciplinary FPIES education at our institution, including developing prerecorded presentations by project team members, which will be available in addition to ongoing group-based sessions. We will increase outreach about the sessions to health care providers caring for children with FPIES within both specialty clinics and primary care to increase recruitment among diverse groups of families. In addition to collecting data on caregiver satisfaction with educational sessions, we will incorporate measures of health-related quality of life and self-efficacy for FPIES management and track disparities in resource utilization. We will also translate our FPIES resources handout into Spanish and make this resource available as a patient education handout for all patients and families with FPIES at our institution.

FPIES management requires a high degree of caregiver medical literacy and access to health care providers knowledgeable in the condition. This pilot initiative could serve as a model for developing further services for caregivers of children with FPIES, including earlier and broader access to multidisciplinary education and support.

Clinical Implications.

Caregivers reported a group-based multidisciplinary education session to be useful in managing food protein–induced enterocolitis syndrome and valued social support from others with similar experiences. This pilot could serve as a model to increase access to reliable food protein–induced enterocolitis syndrome education and psychosocial support.