What to Measure in Aneurysmal Subarachnoid Haemorrhage Research-An International Delphi Survey

Christopher R Andersen; Justin Presseau; Bev Shea; Maria Luisa Marti; Madeline McCoy; Gordon Fernie; Lauralyn McIntyre; Anthony Delaney; Michaël Chassé; Victoria Saigle; Shawn Marshall; Dean A Fergusson; Ian Graham; Jamie Brehaut; Alexis F Turgeon; François Lauzier; Peter Tugwell; Xiaohui Zha; Phil Talbot; John Muscedere; John C Marshall; Kednapa Thavorn; Donald Griesdale; Canadian Critical Care Trials Group; Shane W English

doi:10.1007/s12975-024-01271-8

What to Measure in Aneurysmal Subarachnoid Haemorrhage Research-An International Delphi Survey

Transl Stroke Res. 2024 Jul 13. doi: 10.1007/s12975-024-01271-8. Online ahead of print.

Authors

Christopher R Andersen^{1

2

3}, Justin Presseau^{4

5}, Bev Shea^{4

5}, Maria Luisa Marti⁴, Madeline McCoy⁴, Gordon Fernie⁴, Lauralyn McIntyre^{4

5

6

7}, Anthony Delaney^{1

2

3}, Michaël Chassé⁸, Victoria Saigle⁴, Shawn Marshall^{4

7}, Dean A Fergusson^{4

6}, Ian Graham^{4

5}, Jamie Brehaut^{4

5}, Alexis F Turgeon^{9

10}, François Lauzier^{10

11}, Peter Tugwell^{4

5

7

12}, Xiaohui Zha^{13

14}, Phil Talbot², John Muscedere¹⁵, John C Marshall¹⁶, Kednapa Thavorn^{4

5}, Donald Griesdale^{17

18}; Canadian Critical Care Trials Group; Shane W English^{19

20

21

22}

Collaborator

Canadian Critical Care Trials Group:
Brenda Lucas

Affiliations

¹ Malcolm Fisher Department of Intensive Care Medicine, Royal North Shore Hospital, Sydney, Australia.
² Critical Care Program, The George Institute for Global Health, University of New South Wales Sydney, Sydney, Australia.
³ Northern Clinical School, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia.
⁴ Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁵ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.
⁶ Department of Critical Care, The Ottawa Hospital, Ottawa, ON, Canada.
⁷ Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
⁸ Department of Medicine, Division of Critical Care, Centre Hospitalier de L'Université de Montréal, Montréal, Québec, Canada.
⁹ Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, Université Laval, Québec City, Québec, Canada.
¹⁰ Population Health and Optimal Health Practice Research Unit (Trauma - Emergency - Critical Care Medicine) CHU de Québec-Université Laval Research Centre, Québec City, Québec, Canada.
¹¹ Department of Medicine, Department of Anesthesiology and Critical Care, Université Laval, Québec, Canada.
¹² Bruyère Research Institute, Ottawa, ON, Canada.
¹³ Inflammation and Chronic Disease Program, Ottawa Hospital Research Institute, Ottawa, Canada.
¹⁴ Department of Biochemistry, Immunology & Microbiology, University of Ottawa, Ottawa, Canada.
¹⁵ Department of Critical Care Medicine, Queen's University, Kingston, ON, Canada.
¹⁶ Departments of Surgery and Critical Care Medicine, Unity Health Toronto, Toronto, ON, Canada.
¹⁷ Department of Anesthesiology, Pharmacology & Therapeutics, University of British Columbia, Vancouver, BC, Canada.
¹⁸ Centre for Clinical Epidemiology & Evaluation, Vancouver Coastal Health Research Institute, Vancouver, BC, Canada.
¹⁹ Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, ON, Canada. senglish@toh.ca.
²⁰ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada. senglish@toh.ca.
²¹ Department of Critical Care, The Ottawa Hospital, Ottawa, ON, Canada. senglish@toh.ca.
²² Department of Medicine, University of Ottawa, Ottawa, ON, Canada. senglish@toh.ca.

PMID: 38997598
DOI: 10.1007/s12975-024-01271-8

Abstract

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.

Keywords: Cerebral aneurysm; Core outcome set; Patient-important outcomes; Subarachnoid hemorrhage.