Health‐Related Quality of Life Over Time in Children With Eosinophilic Esophagitis and Their Families

Abstract

Objectives Existing treatments for pediatric EoE effectively reduce inflammation. However, impact of treatment on health-related quality of life (HRQoL) over time for pediatric patients with EoE and their families has not been systematically assessed. We hypothesized that individualized multidisciplinary treatment would improve both child and family HRQoL over time, with improvements associated with decreased symptom severity. Methods Children with EoE treated in 4 tertiary care centers were enrolled. Baseline assessments occurred at the time of patients’ first evaluation; follow-up assessments occurred at 2 and 6 months after baseline. Presence and severity of 8 EoE symptoms were measured. HRQoL was measured with the PedsQL parent proxy-report (PR), child self-report (CR), and Family Impact Module (FIM). Statistical analyses used mixed-effects modeling to test changes over time for child and family HRQoL. Results Ninety-seven children were enrolled (ages 2–18 years; mean age, 7.7 yrs +/− 4.8 y; 78% male; 80% Caucasian). Baseline mean symptom number was 3.5 (SD, 2.3) and symptom severity was 5.5 (SD, 4.5). HRQoL scores were significantly related to symptom scores (P < 0.001). EoE symptom severity decreased during the study (P=0.03). PR PedsQL Total and FIM Total scores improved from baseline to 6 months (respectively, adjusted means 78.4 vs 81.0, P=0.0006; 68.9 vs 70.1, P=0.03). Interactions with baseline symptom severity revealed that subjects with lowest symptom severity showed the most improved HRQoL scores (P=0.0013). Conclusions HRQoL improved during the course of evaluation and treatment, with positive changes being strongest for patients with less symptom severity at baseline.

Disease associations in eosinophilic oesophagitis and oesophageal eosinophilia

“…Two recent retrospective studies have bolstered this hypothesis of the natural history of the disease [55,56], with persistent symptoms, endoscopic features, and oesophageal eosinophilia significantly reducing the healthrelated quality of life (QoL) of affected individuals over time [57][58][59][60]. In contrast, in up to 42% of EGE cases, the patients suffered a single outbreak of EGE lasting less than 3 months, while 37% of patients exhibited a recurrent pattern of disease, with an average of 5.2 flare-ups during extremely variable intervals.…”

Eosinophils in Gastrointestinal Disorders

“…36,93,94 Psychosocial expertise may be necessary to help severely affected patients cope with this chronic disease. 45,95 …”

Parental perception of their child's quality of life in children with non‐immunoglobulin‐E‐mediated gastrointestinal allergies

“…Studies using more generic HRQoL measures have been used. For example, Klinnert et al looked at family HRQoL in children diagnosed with eosinophilic oesophagitis, a GIFA condition, using a generic pediatric QoL questionnaire (PedsQL) and found that these children and their families reported a diminished HRQoL compared with healthy individuals, with lower scores in the children with increased severity of symptoms and number of foods eliminated . Meyer et al looked at the impact of GIFA on the family (using the family impact module [FIM] PedsQL ™ questionnaire) and showed that this was worse compared with families of children with chronic diseases such as sickle cell disease and intestinal failure.…”