Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients

Abstract Background/Purpose The aims were to present the framework for the development a condition-specific health-related quality-of-life (HRQOL) questionnaire for children with esophageal atresia (EA) and to describe HRQOL experiences reported by children and by their parents. Methods Utilizing the well-established DISABKIDS methodology, standardized focus group discussions were held and transcribed. HRQOL experiences were identified, content analyzed and evaluated using descriptive statistics. Results 30 families (18 children 8–17 years, 32 parents of children 2–17 years) participated in ten focus group discussions. 1371 HRQOL experiences were identified referencing social, emotional and physical aspects of eating and drinking ( n = 368), relationships with other people ( n = 283), general life issues; physical activity, sleep and general health ( n = 202), communicative/interactive processes of one's health condition ( n = 161), body issues ( n = 109), bothersome symptoms ( n = 81), impact of health care use/medical treatment ( n = 78), confidence in oneself and in the future ( n = 65) and difficulties because of concomitant anomalies ( n = 24). A basis of two age-related HRQOL questionnaires for children with EA (2–7 years, 8–17 years) was subsequently constructed. Conclusions EA interacts with various aspects of the child's life. In addition to HRQOL issues of eating and drinking, social dimensions like relationships and interactions with other people seem to be prominent condition-specific HRQOL parameters. The settings for the development of the first condition-specific HRQOL questionnaires for patients with EA are established.