Cryptogenic stroke patients and their caregivers recently surveyed by the American Heart Association/American Stroke Association said that they experience several negative consequences of having an undetermined cause of their stroke, and only one-fifth received information about cryptogenic stroke at the time of diagnosis.

This lack of information prompted the organization to start the Cryptogenic Stroke Initiative . The initiative will inform cryptogenic stroke patients and help “them to work with their healthcare team to prevent a second stroke,” Dr. Mary Ann Bauman , chair of the American Stroke Association Advisory Committee, said in an announcement .

This month, the American Heart Association/American Stroke Association, with support from Medtronic, published a free informational document. This Patient Guide to Cryptogenic Stroke is the first of several guides that the American Stroke Association plans to create for cryptogenic stroke patients. This edition of the guide includes “information on cryptogenic stroke diagnosis, what happens during a stroke, secondary prevention information, questions [for patients to ask their doctor, and] support resources,” the Association said.

In the organizations’ survey, which included 309 cryptogenic stroke patients and caregivers, more than 50% reported anxiety and frustration when the cause of stroke is undetermined. Of the 20% of patients and caregivers who received information about cryptogenic stroke at the time of diagnosis, the information was verbally communicated 75% of the time.