Do Subarachnoid Hemorrhage Outcome Measures Include Patient, Family and Caregiver Priorities?: A Scoping Review
CCCF ePoster library. English S. Nov 7, 2018; 233354; 3
Shane English
Shane English
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Introduction: Subarachnoid hemorrhage (SAH) affects a young population and results in death or disability in many who experience it. This epidemiology is very different from other forms of stroke. Consequently, patients with SAH and their families may have different priorities for recovery. Involving patient perspectives is encouraged in research and is often accomplished using patient-reported outcome measures (PROMs). However, it is unclear whether, and to what extent, PROMs are informed by and/or reflect patient and family priorities.


Objectives: We aimed to systematically identify and describe all literature that (1) identified patient/family/caregiver priorities for factors to include in SAH-specific PROMs, (2) developed novel SAH outcome measures by incorporating patient/family/caregiver perspectives (including co-development), or (3) involved patient, family and/or caregiver perspectives in evaluating existing outcome measures in SAH.


Methods: We conducted a scoping review using Embase and Ovid MEDLINE from inception to February 6, 2018. Study eligibility and data extraction was performed independently and in duplicate. For each eligible citation, we abstracted information about study population, design, type of patient involvement, and outcome measures. We planned a qualitative summary of all included studies.


Results: Our search yielded 4961 unique citations, of which 15 met our eligibility criteria and were included in this review. There were 879 patients with SAH and 241 carers from the 11 distinct articles that reported this data. We did not find any studies where SAH survivors or their families were directly involved in the full continuum of PROM outcome conceptualization from development to evaluation. We identified 39 measures of importance to patients with SAH. We identified only two PROMs developed with patients and one that was evaluated post-hoc.


Conclusion: We identified three PROMs that have involved patients in some way, but the extent to which they reflect patient priorities remains unclear. More work is needed to ensure SAH research is not overlooking outcomes that are important to patients.


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