Commentary: Psychological and Behavioral Challenges for Families of Children with Eosinophilic Gastrointestinal Disorders

The current issue of the Journal of Pediatric Psychology includes two papers about children and adolescents with eosinophilic gastrointestinal diseases, or EGIDs. Each paper addresses key behavioral and psychological aspects of pediatric EGIDs. The first paper, by Taft and colleagues, characterizes caregiver stress in the parents of children with EGIDs and describes the relationships between the caregivers’ pediatric illness stress experiences and their own psychological functioning, as well as their children’s behavioral adjustment (Taft, Ballou, & Keefer, 2012). The second paper, by Hommel and colleagues, examines treatment adherence rates for children with EGIDs and their families (Hommel, Franciosi, Hente, Ahrens, & Rothenberg, 2011). Together, the papers provide an initial look at this recently recognized disease in terms of the challenges posed for the caregivers of the children with EGIDs, and to some extent for the children themselves, as they strive to cope with the illnesses and follow the recommended treatments aimed at disease management. The goal here is to underscore the importance of certain aspects of the initial findings from the papers and to further describe disease characteristics and related impacts that must be considered in future research regarding behavioral and psychological aspects of pediatric EGIDs. The paper by Taft and colleagues focuses on caregiver stress that is experienced by mothers of children with EGIDs, mostly with eosinophilic esophagitis (EoE). In comparison with parent stress levels measured with the same instrument in other studies of pediatric illness (e.g., Hilliard, Monaghan, Cogen, & Streisand, 2010), stress levels for caregivers in this study were extraordinarily high. Demographic correlates of the high caregiver stress levels, low socioeconomic status and single parenting, may reflect reduced resources and support for meeting medical care demands for these children. Caregiver stress was also associated with disease variables including symptoms and disease management burden. In the Taft study, symptom burden was measured using mothers’ ratings of ‘‘recent flare severity.’’ For EoE, the maternal response to a ‘‘recent flare’’ not only includes an assessment of severity of the child’s symptoms, but also an attempt to determine how the symptom might be associated with a particular food exposure. This determination is especially challenging because most eosinophilic inflammation results from non-immunoglobulin E (IgE)-mediated allergic processes, with delayed responses that evolve over hours and days following food allergen exposure (Atkins, Kramer, Capocelli, Lovell, & Furuta, 2009), clouding the identification of culprit foods. Many children with EoE also have IgE-mediated food allergies, with symptoms that occur immediately after ingestion and have potential for life threatening anaphylaxis. Distinguishing between IgE-mediated and non-IgE-mediated food allergies may be critical for understanding caregiver anxiety and children’s distress regarding dietary restrictions and accidental food exposure. Certain qualitative aspects of EGID symptoms also can be associated with heightened caregiver stress. For EoE, the most commonly diagnosed of the EGIDs, presenting symptoms vary according to patient age. For example, feeding dysfunction is the most common primary presenting symptom for very young children (Mukkada et al., 2010). Epidemiological studies have shown that as many as a third of children diagnosed with EoE are less than 3–5 years of age, so studies of pediatric patients that encompass the entire age range from 0 to 18 years likely include a substantial proportion of young children with feeding problems. Having a young child with food refusal or vomiting, often resulting in poor weight gain or failure to thrive, elicits high anxiety, and is extraordinarily distressing for parents. Abdominal pain is the most common presenting symptom for older children; the ambiguity of this complaint, often lacking validating external evidence (unlike