Quality of life in paediatric eosinophilic oesophagitis: what is important to patients?

Background and aims Current research outcomes in paediatric eosinophilic oesophagitis (EoE) are directed towards histological improvement with no attention to health‐related quality of life (HRQOL). The primary objective of this study was to identify key patient‐reported and parent proxy outcome elements of EoE disease‐specific HRQOL. Methods The research team comprised clinical allergists and gastroenterologists with expertise in paediatric EoE as well as two PhD psychologists with extensive experience in qualitative research. Focused interview techniques were adapted from the Pediatric Quality of Life Inventory 4.0™ methodology and the consolidated criteria for reporting qualitative research. A semi‐structured interview guide of open‐ended questions was developed, and extensive review of audio‐taped transcripts was performed. Results A total of 42 focus interviews were conducted. Child self‐reports were obtained for patients in the 5–7, 8–12 and 13–18 years of age groups, and parent proxy reports were obtained in the 2–4, 5–7, 8–12 and 13–18 years of age groups. We discovered that patients and parents often had different concerns, illustrating unique aspects of EoE‐specific HRQOL that were not captured in generic HRQOL instruments. Specific themes that emerged from these interviews included, but are not limited to: feelings of being different than family and peers, diet and medication adherence, difficulties with eating food and worry about symptoms and illness. Conclusion Paediatric EoE patient and parent proxy interviews revealed many EoE‐specific aspects of HRQOL that are not captured in generic HRQOL instruments. Outcome measures that reflect patient‐ and parent proxy‐reported HRQOL are a critical need in paediatric EoE.