Aneurysmal subarachnoid haemorrhage (aSAH) is a devastating condition with high mortality and morbidity. The outcome measures used in aSAH clinical research vary making it challenging to compare and combine different studies. Additionally, there may be a mismatch between the outcomes prioritized by patients, caregivers, and health care providers and those selected by researchers. We conducted an international, online, multiple round Delphi study to develop consensus on domains (where a domain is a health concept or aspect) prioritized by key stakeholders including those with lived experience of aSAH, health care providers, and researchers, funders, or industry professionals. One hundred seventy-five people participated in the survey, 59% of whom had lived experience of aSAH. Over three rounds, 32 domains reached the consensus threshold pre-defined as 70% of participants rating the domain as being critically important. During the fourth round, participants ranked the importance of each of these 32 domains. The top ten domains ranked highest to lowest were (1) Cognition and executive function, (2) Aneurysm obliteration, (3) Cerebral infarction, (4) Functional outcomes including ability to walk, (5) Delayed cerebral ischemia, (6) The overall quality of life as reported by the SAH survivor, (7) Changes to emotions or mood (including depression), (8) The basic activities of daily living, (9) Vasospasm, and (10) ICU complications. Our findings confirm that there is a mismatch between domains prioritized by stakeholders and outcomes used in clinical research. Our future work aims to address this mismatch through the development of a core outcome set in aSAH research.
ContributorsShane W English (Clinician, Researcher, Project Lead - Canada)
Christopher R Andersen (Clinician, Researcher, Project Lead - Australia/UK)
Maria Luisa Marti (Patient Research Partner)
Philip Talbot (Patient Research Partner)
Victoria Saigle (Coordinator, Researcher)
Justin Presseau (Social Scientist, Researcher)
Anthony Delaney (Clinician, Researcher)
Simon Finfer (Clinician, Researcher)
Disease Category: Neurology
Disease Name: Aneurysmal Subarachnoid Haemorrhage
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Conference participants
- Families
- Patient/ support group representatives
- Researchers
- Service commissioners
- COS for clinical trials or clinical research
- Consensus meeting
- Delphi process
- Focus group(s)
- Literature review
- Other
- Systematic review
Initial scoping review (published) followed by Q-sort method for stakeholder attitudes, Delphi process +/- Consensus meeting for final COS.