We know far too little about stroke in young adults in America, especially how it affects survivors’ quality of life, their experiences with the healthcare system, and their needs for supportive services as they reenter their communities to resume their lives “after stroke.” We know even less about the conditions under which caregivers of young survivors strive to adjust to the occurrence of stroke in a loved one under the age of 65.
The National Stroke Foundation’s The Needs of Stroke Survivors in Australia (PDF) and The Stroke Association’s UK Stroke Survivors Needs Survey (PDF) provide examples of data outcomes achieved by surveying survivors and caregivers to clarify their needs. There has been no comparable survey in America.
Currently, America relies upon a well-established Behavioral Risk Factor Surveillance System. It is used by both federal and state government agencies to identify emerging health problems, monitor health objectives and inform public health policies and programs. But, this surveillance tool fails to specifically collect data about stroke in young adults.
This unfortunate lack of data hinders meaningful discussion about stroke in young adults. We cannot expect uninformed policymakers, legislators or health care providers to respond to our calls for considerations and accommodations for young stroke until credible, national data is readily at hand.
The paucity of data on young stroke was a key topic during our YoungStroke 2015 event. It provided a critical opportunity for survivors and caregivers to shape a new research agenda on young stroke in America captured in two focus groups facilitated by Souvik Sen, MD, MS, MPH, Professor and Chairman of the Department of Neurology, School of Medicine, and Endowed Stroke Chair for the SmartState Center of Economic Excellence.
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