The KEKS Health Folder and the KEKS Portal

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

The Beginnings of Structured Follow-up Care – The KEKS Follow-up Examination Book

The preceding articles show the importance of lifelong follow-up care for a corrected esophageal atresia across different medical specialties. To provide clinics and families with a guide for successful follow-up care, the German patient organization for EA (KEKS) developed the KEKS Follow-up Examination Book in 2010 in collaboration with its scientific advisory board. This binder contained 15 questionnaires for follow-up examinations and a medical history that detailed the childʼs initial situation before their first discharge. The follow-up clinics would fill out the forms during the examinations and send the results to the registry-managing institute (initially IMBI, Heidelberg). Since 2021, IMBEI in Mainz has been our partner institute, and the forms are first sent to KEKS.

Digitization of the Follow-up Examination Forms – The New KEKS Portal

From 2022 to 2024, KEKS fundamentally revised the follow-up examination book.

The main goal was to digitize the binder and to incorporate the patientʼs perspective. For this purpose, KEKS edited the questionnaires so that they could be filled out by families themselves, independent of the follow-up examinations at the clinic.

The new forms are designed to represent the familyʼs perspective and to train parents to assess potential symptoms and their childʼs current situation. Furthermore, the forms serve as a basis for preparation for the follow-up examinations in the clinic. This relieves the burden on doctors, and families can come to the appointment with prepared questions.

The questions focus on the childʼs current condition, considering everyday issues in the categories of general health, breathing, swallowing/thriving, sleeping/resting, treatments, therapies, support measures, results of early detection screenings (U-examinations), new diagnoses, and other topics (psychological support, overall situation). A total of 9 questionnaires are now filled out, starting with the medical history. This is followed by 8 follow-up examinations, which are timed to coincide with the U- and J-examinations. They should be carried out at the ages of 3, 6, 9, and 12 months, 2 – 3 years, 4 – 6 years, 9 – 10 years, and 16 – 17 years, respectively. These are routine follow-up examinations. If symptoms or problems arise, further consultations should take place at the follow-up clinic regardless of the recommended schedule. The last questionnaire (NU8) is completed by both the parents and the adolescents themselves, to prepare them to take responsibility for their own follow-up care.

This change also supports the patient-centered perspective that is becoming increasingly important in research. The new forms therefore serve as a Patient-Reported Outcome Measure (PROM). PROMs map the subjective health status of patients and make it measurable and comparable. They can help to improve quality of life and patient orientation in care [1]. KEKS also uses the data from the questionnaires as a basis for medical consultations and, at a later stage, for scientific studies.

Although the questionnaires were designed so that medical laypersons can fill them out easily, we advise that the medical history is best completed in the clinic before the first discharge, together with the treating professionals and the family. This way, any unclear terms can be clarified immediately. However, many families only receive the binder and access to the KEKS portal after being discharged from the clinic. To enable families to fill out the questionnaires completely, it is helpful to have a clear and complete doctorʼs or discharge letter. It cannot be ruled out that families will turn to the pediatricianʼs office with unclear medical terms.

The KEKS Health Folder

In addition to access to the portal and thus the follow-up examination forms, families receive a Health Folder. This contains information about esophageal atresia with materials for the family as well as for health and other professionals. It also provides space for the childʼs health records.

The folder includes recommendations for follow-up examinations, information for parents and affected individuals, e.g., information sheets on VACTERL, infection management, reflux management, degree of disability and care level, and starting external care. In addition, the folder contains information sheets for medical and educational professionals, e.g., for pediatric practices and family doctors, regarding the importance of lifelong follow-up care, information on infection management, and information sheets for daycare centres or schools. The appendix lists relevant literature on the topic of esophageal atresia.

We ask pediatric practices to talk to families about the Health Folder and the follow-up examinations and to point out their importance.

Families receive the folder and access to the KEKS portal free of charge and regardless of membership via KEKS The content of the folder is available for free download via the following QR code:

Importance of the KEKS Follow-Up Examination Book and the KEKS Health Folder

One important reason for creating a KEKS Follow-Up Book and the new KEKS Health Folder is that many families are confronted with scientifically unfounded statements about esophageal atresia and its consequences. The most common statements from healthcare professionals that families report to KEKSʼs medical advisory service are as follows:

• Esophageal atresia is cured with surgery.

• If the esophagus is sealed and wide, eating canʼt be a problem.

• A viral infection doesnʼt require antibiotics.

• Tracheomalacia will outgrow itself.

• Failure to thrive can be treated with more calories.

• Eating eliminates or prevents strictures.

• Coughing and low performance are normal.

The preceding articles clearly show that none of these “legends about esophageal atresia” are scientifically sound.

A Word from a Professional

“The follow-up examination book–in its proven and new versions–supports us doctors and the affected families in structuring follow-up care and including all aspects of the disease in every contact.” – Prof. Dr. Michael Boettcher, Chief Physician of Pediatric Surgery, University Hospital Mannheim

Conflict of Interest

The authors declare that they have no conflict of interest.

• Literatur/References

• 1 Steinbeck V, Ernst SC, Pross C. Patient-Reported Outcome Measures (PROMs): ein internationaler Vergleich. Herausforderungen und Erfolgsstrategien für die Umsetzung von PROMs in Deutschland. Bertelsmann Stiftung; 2021.

Publication History

Article published online:
10 October 2025