Abstract
The importance of lifelong, structured follow-up for corrected esophageal atresia
led to the development of a follow-up book. This was updated and digitized in 2024.
The KEKS-Portal allows families to complete the forms themselves, reflects the patient
perspective, and trains parents in symptom assessment. The new digital forms serve
as preparation for clinic appointments and as a “Patient-Reported Outcome Measure”
(PROM). KEKS uses the data for consultations and research. Additionally, families
receive a free health folder with information on esophageal atresia. These offerings
are an important support for families and clinics to structure and improve follow-up
care.
Keywords
PROM - Patient-Reported Outcome Measure - follow-up care - oesophageal atresia/esophageal
atresia
