Experiences of symptom burden among young children born with esophageal atresia–tracheoesophageal fistula: a US focus group study
Young children born with EA-TEF experience a significant symptom burden that can be reflected as a summative composite of the dimensions respiratory and digestive symptom frequency, severity and distress, in addition to feeding difficulties. This supports the need for a disease-specific measurement of symptom burden that is guided by the content and wording obtained directly from the parents' descriptions to help establish its content validity.
Authors
- Peter Ngo (ORCID: https://orcid.org/0000-0001-6243-6465)
- Michaela Dellenmark‐Blom (ORCID: https://orcid.org/0000-0002-1467-9427)
- Lauren Cardoni
- Anke Widenmann
- Abdimajid Mohamed (ORCID: https://orcid.org/0000-0001-5395-2273)
- John M. Bennett (ORCID: https://orcid.org/0000-0001-7517-5567)
- Jessica L. Yasuda (ORCID: https://orcid.org/0000-0002-4998-3322)
- Rosella Micalizzi
- Benjamin Zendejas (ORCID: https://orcid.org/0000-0002-1231-5283)
- Leah Frain
- Kamal R.M. Woods
- Graham Slater
- Lianne Cole (ORCID: https://orcid.org/0009-0007-2649-2217)
Institutions
- Boston Children's Hospital (US)
- Sahlgrenska University Hospital (SE)
- Global College (CY)
- University of Gothenburg (SE)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-18
- DOI
- https://doi.org/10.1186/s13023-025-03939-2
- Citations
- 1
- Primary Topic
- Esophageal and GI Pathology
- Type
- article
- Field-Weighted Citation Impact
- 2.01
Funders
- Göteborgs Universitet