Historically, patients with EA-TEF had little follow-up by specialists once they recovered from the initial repair. However, longitudinal studies in adult survivors of EA-TEF highlighted the high prevalence of respiratory complications across the lifespan44,46. Early detection and management of respiratory complications may prevent irreversible structural lung disease and loss of lung function11,16,18,152.
The RCWG strongly recommends systematic follow-up by multidisciplinary teams that include pulmonologists, gastroenterologists, otolaryngologists, pediatricians and thoracic surgeons, as well as dieticians, physiotherapists, speech-language pathologists or occupational therapists, and social workers2,19,20,107,124,153–155. Some centres have also included diagnostic and interventional radiologists and an intensivist156. Special emphasis is given to have regular evaluation and follow-up by psychologists because of growing concern about the long-term effect of EA-TEF on the quality of life of the patients and their families 157–160.
This approach allows the timely identification of multisystem treatable abnormalities, better care coordination and increase safety by reducing the number of exposure to general anesthesia152. For the family, it decreases the number of visits to the hospital and the associated facility charges. This results into higher family satisfaction, while it remains cost effective for the hospitals106,161,162 .
The RCWG strongly agreed that patients with EA-TEF should receive all recommended mandatory vaccinations as well as the annual influenza vaccine. There was only moderate agreement on the need for RSV prophylaxis possibly reflecting different policies that exist in each country regarding this intervention.
How often the patients need to be evaluated by the entire team depends on the special needs of the patients and the feasibility of assembling such a large team in each institution158. Acknowledging that such a team may not be feasible in smaller institutions, let alone in clinics or doctors’ offices, the RCWG developed a list of the essential elements for the follow-up of patients with EA-TEF (Tables 1A, 1B & 2)