Burden of Eosinophilic Esophagitis

Eosinophilic Esophagitis (EoE) is a chronic disease. A prospective, longitudinal, multicenter study of 109 children documented that even with long-term treatment, symptoms are often chronic, though at reduced severity. The most severe symptoms and the greatest number of symptoms occur in children younger than 7 years, although adolescents can have severe symptoms as well. Symptoms may not only depend on the extent and severity of esophageal inflammation and the presence of esophageal stenosis may lead to intermittent food impaction with associated severe pain.

Quality of Life

A child’s quality of life is affected by their physical health as well as psychosocial functioning, which includes social, emotional and school functioning. Increased frequency and severity of EoE symptoms are associated with a decreased quality of life. Severe symptoms also correlate with a negative effect on family functioning.

Children with EoE commonly have other atopic diseases and those with atopic disease (eg, asthma, allergic rhinitis, food allergy, eczema) in addition to EoE have a lower quality of life than those who have EoE alone.

Self-reported quality of life for children with EoE is adversely affected by an elimination diet, particularly elemental diets. Fortunately, quality of life can improve over time with a multidisciplinary approach to treatment and adequate control of symptoms.

Mental Health

Children with EoE have greater mental health needs than children without a chronic illness. Mental health can be affected by substantial dietary restrictions, repeat endoscopies, and percutaneous endoscopic gastrostomy (PEG) feeding.

In one study (n = 64), during an 18-month period, children with EoE reported:

• 69% with social difficulties
• 41% with anxiety
• 33% with sleep difficulty
• 28% with depression
• 26% with school problems

Further, rates of anxiety and depression were reported to increase with age.

Growth Delay

In addition to the symptoms of EoE, which include dysphagia, vomiting and pain, children may also have feeding difficulty that potentially contributes to growth delay. Children with EoE who have a restricted diet may experience deficiencies in either caloric intake or specific nutrients both of which may contribute to growth delays.

Feeding Difficulties

Very young children who are on liquid diets, including those who receive nutrition via feeding tubes, are at risk of developing food aversions, restricted food preferences, and delays in oral feeding skills.

Socialization Issues

Children with EoE report that choking and gagging during mealtimes are a source of increased anxiety. Further, children on elimination diets or liquid diets can have trouble with socialization and feelings of isolation, because food is often a large part of family, school and cultural focus.

Family Functioning

Families, particularly those of children who have severe EoE, can experience stress that affects their ability to function optimally. Stress can arise from:

• The need to adjust meals to accommodate the various needs of all family members, including the child with EoE
• Financial pressures due to the often high costs of allergen-free foods
• Effort and time needed to adhere appropriately to medication regimens and physician visits (including repeated endoscopies)
• Symptoms of dysphagia during meal time
• Managing a child’s food intake when away from home, which requires motivation, time, and training of alternate caregivers and teachers

The development of this information was made possible through support from Sanofi Genzyme and Regeneron.