In patients with aneurysmal subarachnoid hemorrhage (aSAH), there are insufficient data to indicate which patient-reported outcome measures (PROMs) are suitable for evaluating patient-reported outcomes, according to study findings published in Neurology.
Researchers from The Netherlands performed a systematic literature review to identify and analyze studies that assessed measurement properties of PROMs in patients with aSAH. The PROMs in each study captured general aspects of each patient’s health status, quality of life, or disease-associated symptoms. Overall, a total of 9 studies that evaluated 7 different disease-specific and generic PROMs were included in the review. The consensus-based standards for the selection of health status measurement instruments (COSMIN) checklist was used to evaluate the quality of studies and measurement properties.
In the 9 studies, the 7 PROMs were EuroQol 5D, Health Utility Index, modified Rankin Scale, Quality of Life after Brain Injury overall scale, Subarachnoid Haemorrhage Outcome Tool, Stroke-Specific Quality of Life scale (SS-QoL), and the short version of the SS-QoL.
Between the two modified Rankin Scale methods used (ie, structured interview and online survey), there was low evidence for sufficient reliability, with a nonlinear distribution between scores. The six-item Quality of Life after Brain Injury overall scale was considered indeterminate and featured a low quality of evidence; researchers reported potential difficulty in interpreting scores due to lack of relevant answer options.
Further, the 49-item SS-QoL was rated insufficient with regard to responsiveness and featured very low evidence quality. Except for thinking and energy, there was a ceiling effect with all 12 domains in the SS-QoL. No conclusions could be made for the internal consistency of the short version of the SS-QoL, which also features a low quality of evidence. With regard to the short SS-QoL, there was insufficient face validity due to mismatch of answer categories.
A limitation of this review included the use of updated COSMIN checklist, which lacks evidence to determine its inter-rater agreement and reliability.
Researchers concluded that all the PROMs identified in this study have the potential to be used in patients with aSAH; however, no conclusion can be drawn about their validity and reliability. Findings suggest the SS-QoL is the most suitable PROM currently available; however, the researchers state that “given the specific long-term consequences of aSAH we consider a disease-specific PROM the most appropriate choice.”
Nobels-Janssen E, van der Wees PJ, Verhagen WIM, et al. Patient-reported outcome measures in subarachnoid hemorrhage: A systematic review. Neurology. 2019;92(23):1096-1112.