P-23: Quality of Life in Children with Eosinophilic Esophagitis Associated With Esophageal Atresia and Tracheoesophageal Fistula

Systematic review: health‐related quality of life in children and adults with eosinophilic oesophagitis—instruments for measurement and determinant factors

“…Interestingly, mean scores given by children themselves and their parents in the specific modules of the PedsQL questionnaire do not coincide, with the parents generally underestimating the impact of the disease regarding children declared HRQoL to the point that mean QoL parent form scores were not significantly different from that found in healthy controls …”

“…The effect of treatment in HRQoL in children has been limitedly assessed: Patients on active EoE treatment showed better QoL levels than those with nontreated disease in a short case series from Australia, which contrasts with results of a large prospective American research, which found that treatment did not modify PedsQL scores at baseline, but family impact impaired with dietary restrictions . Assessing the type of therapy prescribed, as well as its effectiveness in achieving and maintaining disease remission is, thus, essential to understand the effect of therapy in EoE.…”

“…However, data from literature agree in identifying severity of oesophageal symptoms, and disease duration as major determinants of HRQoL in patients with EoE of all ages. Food impaction was recognised as the symptom with the highest effect in impairing several dimensions of the EoE‐QoL‐A score in one study, which may be influenced by the biological activity of the disease as determined by the severity of endoscopic features, including the presence of oesophageal strictures at diagnosis .…”

“…Of the remaining 58 documents retrieved for complete evaluation, 24 were excluded for the following reasons: duplicated abstracts or abstracts previous to full papers (12), lack of information regarding QoL (6) or QoL not structurally assessed (4), subsets of patients included in later papers (1) and no information related with EoE (1). In the end, 34 studies (comprising of 16 full papers 11,12,18,19,21,22,[24][25][26][27][28][29][30][31] and 18 abstracts [32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49] (one of them later published in full 50 ) were included in our systematic review ( Figure 1).…”

“…Regarding the aims of the retrieved studies, the references retrieved included five papers on specific questionnaire developments, 11,12,18,21,22 1 abstract on item refinement 32 and 1 trans-cultural adaptation and validation of a questionnaire. 26 In addition, 14 studies assessed HRQoL by generic instruments, 19,24,25,27,29,[33][34][35][36]39,49 while 11 documents employed diseasespecific scales. 28,30,31,[40][41][42][44][45][46][47][48] A further study which used a nonstructured telephone-based assessment 43 to evaluate HRQoL was not included in our systematic review.…”