The care of families with catastrophic childhood vision loss: Integrating evidence-based medicine and informed shared medical decision making

Abstract

The diagnosis of real or potential catastrophic vision loss in early childhood is devastating to families and poses dilemmas for the pediatric ophthalmologist. There is a significant possibility that trauma resulting from repeated terrifying diagnostic and treatment experiences will create disabling symptoms of post-traumatic stress disorder (PTSD) in young children that may persist lifelong. This lecture presents observations and suggestions for integrating evidence-based medicine and informed shared medical decision making in the management of families with catastrophic vision loss. This family care approach was developed in conjunction with Nancy Mansfield, PhD, executive director of the Institute for Families at Childrens Hospital Los Angeles and is the basis for family management in the Vision Center at CHLA.