Survey of anesthetic and airway management in children and adults with Cornelia de Lange syndrome: parents’ perceptions and perspectives

Abstract

Objective: Cornelia de Lange syndrome (CdLS) is characterized by multiple anatomic malformations, which may affect airway and anesthetic management. The study’s objective was to collect information from families of CdLS patients regarding their perception of their airway and anesthesia experiences and associated complications. This would allow anesthesiologists to evaluate the families’ perspective in order to create a better approach to treating patients.

Methodology: A web-based, 24 question survey was solicited via the CdLS Foundation’s quarterly newsletter (circulation 4,000) It was followed up, via phone, Skype, and e-mail, with questions targeting intubation, ventilation, oxygenation, aspiration, and complications during surgery and procedures requiring sedation. A paper version of the survey was distributed to families and caregivers of the patients at the 2014 CdLS Foundation National Family Conference. The focus of the survey was to obtain the families’/caregivers’ perception related to airway and anesthetic management experiences and perspectives regarding overall clinical care.