APOC
Subarachnoid Hemorrhage and Patient Outcomes – A Patient-Oriented Approach

Clinicians and researchers measure specific signs of injury or recovery called ‘outcomes’ when determining whether research studies are successful or not. In bleeds in the brain from a burst artery (called subarachnoid hemorrhage or ‘SAH’ for short), these ‘outcomes’ or measures of success are most often chosen or defined by researchers or clinicians and not by those most affected: the patients. In the past, researchers and clinicians decided what signs of injury or recovery are important in their study instead of asking patients what matters to them. As a result, research looking at SAH may be missing outcomes that make the biggest difference in the lives of those with SAH or their families. 

In a series of studies, our team (made up of patients, families, researchers and clinicians) are in the process of determining which outcomes patients and their families value the most after they have had this type of brain bleed. We also found out which outcomes are considered the most important by researchers and clinicians. Our goal is to create a list of outcomes (a Core Outcome Set) that all four groups value, agree on, and think should be included in all future research in SAH, and what instruments should be used to measure them. 

Please visit https://sahcoreoutcomes.com/ for more information.


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