Shared decision-making in pediatrics means that families are actively involved in decisions made about a child’s medical care. The parents and mature child do not merely agree to what a physician has already decided is the best course of treatment. The parents and mature child are actively educated about the evidence for the necessity, risk, and benefits of various options.
Ideally, in the care of DSD, careful reports are kept in the patient’s medical record about how and why specific decisions were reached. This way the patient can later look back at his or her medical record and understand the rationale for the choices that were made in his or her treatment. We know from individual histories that adults with DSD find it particularly important to have and to understand their own medical records.
Posted in: Medical Care