title: Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients.
abstract: OBJECTIVE
  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 8-17years, 32 parents of children 2-17years) 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 (2-7years, 8-17years) 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.
authors.affiliation: Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, 416 86 Gothenburg, Sweden. Electronic address: michaela.m.blom@vgregion.se.
authors.forename: Michaela
authors.initials: M
authors.lastname: Dellenmark-Blom
authors.affiliation: Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, 416 86 Gothenburg, Sweden. Electronic address: john.chaplin@gu.se.
authors.forename: John Eric
authors.initials: JE
authors.lastname: Chaplin
authors.affiliation: Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85 Gothenburg, Sweden. Electronic address: vladimir.gatzinsky@gu.se.
authors.forename: Vladimir
authors.initials: V
authors.lastname: Gatzinsky
authors.affiliation: Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85 Gothenburg, Sweden. Electronic address: linus.jonsson@vgregion.se.
authors.forename: Linus
authors.initials: L
authors.lastname: Jönsson
authors.affiliation: Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg University, 405 30 Gothenburg, Sweden; Division of Neonatology, The Queen Silvia Children's Hospital, Sahlgrenska Hospital, 416 85 Gothenburg, Sweden. Electronic address: helena.wigert@gu.se.
authors.forename: Helena
authors.initials: H
authors.lastname: Wigert
authors.affiliation: Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85 Gothenburg, Sweden. Electronic address: jeanette.apell@vgregion.se.
authors.forename: Jeanette
authors.initials: J
authors.lastname: Apell
authors.affiliation: Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85 Gothenburg, Sweden. Electronic address: ulla.sillen@vgregion.se.
authors.forename: Ulla
authors.initials: U
authors.lastname: Sillén
authors.affiliation: Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children's Hospital, 416 86 Gothenburg, Sweden. Electronic address: kate.abrahamsson@vgregion.se.
authors.forename: Kate
authors.initials: K
authors.lastname: Abrahamsson
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D004933:Esophageal Atresia / Q000503:physiopathology / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D010290:Parents; D011788:Quality of Life; D012649:Self Concept; D057566:Self Report; D011795:Surveys and Questionnaires
keywords: Child; Congenital malformation; DISABKIDS; Esophageal atresia; Focus group; Quality of life