What is the problem?
In research studies, clinicians and researchers measure specific signs of injury or recovery called ‘outcomes’. Measuring the right outcomes is critical to understanding the true impact of injury, identifying effective treatments, and providing the most benefit to patients. With brain bleeds resulting from a burst artery (called subarachnoid hemorrhage or ‘SAH’), there is little consistency in the outcomes measured and reported – literally hundreds exist. Often, the outcomes are those studied with other diseases that were not informed by true experiences of SAH patients. No set of agreed upon outcomes has been established. As a result, we cannot learn from combining study results and research to find what is truly important in the recovery of those affected by SAH.
Who are we and what we have done?
Our team includes SAH patients/families, researchers and clinicians from around the world. Our goal is to create a Core Outcome Set (or “COS”) – a list of outcomes (what) and the instruments to measure them (how) – that all 3 groups value, agree on, and think should be included in all future SAH research. Our group has established which outcome characteristics (“what” to measure) are most important according to patients/families, clinicians and researchers.
What will we do and how?
To complete the COS, we now focus on “how” to measure these identified outcomes by following a standard, established model to create the COS. We will identify and evaluate existing assessment tools to measure these domains. We will host a meeting with equal stakeholder representation to establish one prioritized list of outcomes to be used in future SAH research. We will implement and test this COS with new SAH patients from hospitals around the world.
Why is this important?
Having a core outcome set for SAH will help ensure consistency and allow comparisons across future studies to identify the key outcomes that matter most to those affected by SAH.
Core Outcomes in Subarachnoid Haemorrhage Research 