Objective: To understand which outcome measures patients and their families, health care providers, and researchers prioritize after aneurysmal subarachnoid hemorrhage (aSAH).
Methods: We conducted a cross-sectional q-sort survey with participants from three key stakeholder groups. Potential outcomes were identified from interviews and focus groups. Participants were purposively sampled to achieve diversity based on stakeholder group, geography, and profession. Respondents sorted 27 outcomes in a quasi-normally distributed grid (Q-Sort) from most to least important. Principal components analysis was used to determine similarities in the way participants sorted the outcome measures resulting in distinct groupings. Overall rankings were also reported.
Results: 112 participants were invited. 70 responded and 64 participants from 25 different countries completed a Q-sort. Balanced stakeholder representation was achieved. Five distinct patterns were identified based on survival, pathophysiological, psychological, resource use, and functional outcome measures. Quality of life as reported by the patient was the highest ranked outcome measure followed by independence and functional measures. Survival and biomedical outcomes were ranked in the middle and cost measures last.
Conclusions: In this diverse sample of key stakeholders, we characterized several distinct perspectives with respect to outcome measure selection in aSAH. We did not identify a clear pattern of opinion based on stakeholder group or other participant characteristics. Patient-reported measure of quality of life was ranked the most important overall with function and independence also highly rated. These results will assist study design and inform efforts to improve outcome selection in aSAH research.
To understand which outcome measures patients and their families, health care providers, and researchers prioritize after aneurysmal subarachnoid hemorrhage (aSAH).
ContributorsChristopher R. Andersen, Justin Presseau, Victoria Saigle, Emily Fitzgerald, Madeline Lamannal, Phil Talbot, Anthony Delaney, and Shane W. English
Disease Category: Neurology
Disease Name: Aneurysmal Subarachnoid Haemorrhage
Age Range: Unknown
Sex: Either
Nature of Intervention:
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Researchers
- Patient perspectives
- Focus group(s)
- Interview
- Semi structured discussion
- Survey
The first step is to create a concourse of statements through a variety of techniques and achieve as broad a range of statements as possible. The concourse is then reduced by the researchers into a manageable but representative list (q-set) that can be used for sorting. The participants are provided with the q-set and then rank the statements between two extremes. The pattern for the distribution is usually a quasi-normally distributed grid, although other patterns are also effective. A quantitative analysis is then performed on the q-sorts to identify shared perspectives or viewpoints called factors. There is a representative q-sort for each factor that enables qualitative interpretation of the result. The concourse was developed through several techniques including a working group with members of all three
stakeholder groups, a focus session with aSAH survivors and their families in North America, and interviews with health care providers and aSAH survivors in the UK and Australia.