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

  • Yvon F. Bryan Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
  • Sung M. Kim Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
  • Kathleen N. Johnson Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA);
  • Katherine Schroeder Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
  • Mohsin Shafi Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
  • Sung T. Kim Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
  • Joseph May Department of Anesthesiology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1009 (USA)
Keywords: Cornelia de Lange syndrome, Survey, Parents, Perception, Perspective, Airway, Anesthesia

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.

Published
01-19-2019
How to Cite
Bryan, Y. F., Kim, S. M., Johnson, K. N., Schroeder, K., Shafi, M., Kim, S. T., & May, J. (2019). Survey of anesthetic and airway management in children and adults with Cornelia de Lange syndrome: parents’ perceptions and perspectives. Anaesthesia, Pain & Intensive Care, 21(4), 420-426. Retrieved from https://mail.apicareonline.com/index.php/APIC/article/view/86
Section
Original Articles