Evidence map›Paper›PMID 36750387›Full record

ArticleNeurology2023

Patient Relevance of the Modified Rankin Scale in Subarachnoid Hemorrhage Research: An International Cross-sectional Survey.

Naomi Niznick, Victoria Saigle, Maria Luisa Marti, Josephine Laframboise, Xiaohui Zha, Chris Andersen, Justin Presseau, Michaël Chassé, Lauralyn McIntyre, Dean Fergusson and 7 more

Abstract read
In one paragraph

Article in Neurology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Naomi NiznickFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA. naniznick@toh.ca.ORCID 0000-0003-0935-9135
Victoria SaigleFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Maria Luisa MartiFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Josephine LaframboiseFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Xiaohui ZhaFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.ORCID 0000-0003-2873-3073
Chris AndersenFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Justin PresseauFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Michaël ChasséFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.ORCID 0000-0001-7075-1924
Lauralyn McIntyreFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Dean FergussonFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.ORCID 0000-0002-3389-2485
Alexis F TurgeonFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
François LauzierFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.ORCID 0000-0002-6530-5513
Stephan A MayerFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Shouri LahiriFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
Tim RamsayFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.ORCID 0000-0001-8478-8170
Shane EnglishFrom the Department of Medicine (Neurology) (N.N.), Ottawa Hospital Research Institute (V.S., J.P., L.M., D.F., T.R., S.E.), Patient Partner (M.L.M., J.L., X.Z.), Ottawa Hospital Research Institute, and Department of Medicine (Critical Care) (L.M., S.E.), The Ottawa Hospital, ON, Canada; The George Institute for Global Health (C.A.), Sydney, NSW, Australia; School of Epidemiology and Public Health (J.P., T.R.), University of Ottawa, ON; Department of Medicine (M.C.), Université de Montréal, Montréal, QC; CHUM Research Center (M.C.), Montréal, QC; Population Health and Optimal Health Practices Research Unit (A.F.T., F.L.), CHU de Québec-Université Laval Research Center, QC; Departments of Anesthesiology & Critical Care (A.F.T., F.L.), and Medicine (F.L.), Université Laval, QC, Canada; Departments of Neurology and Neurosurgery (S.A.M.), Westchester Health Network, New York Medical College, Valhalla; and Departments of Neurology, Neurosurgery, and Biomedical Sciences (S.L.), Cedars-Sinai Medical Center, Los Angeles, CA.
APOC Investigators and the Canadian Critical Care Trials Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BACKGROUND AND

objectivesThere is significant heterogeneity in the reporting of outcome measures in aneurysmal subarachnoid hemorrhage (aSAH) research. The modified Rankin scale (mRS) is the most commonly reported functional outcome measure. The mRS focuses on physical disability; however, many aSAH survivors experience sequalae in other domains, and the mRS may therefore not capture outcomes important to aSAH survivors. The objective of this study was to assess the clinical relevance of the mRS as a research outcome measure to people with lived aSAH experience.

methodsWe conducted an international cross-sectional survey of 355 aSAH survivors, family members, and caregivers to evaluate patient-perceived outcomes in relation to the mRS. The mRS was assessed using a previously validated web-based tool.

resultsResponse rate was 60%; respondents from 7 continents were composed of 86% aSAH survivors and 14% family members/caregivers. Agreement between self-assessed outcome and the mRS was poor (Kappa 0.26 [CI 0.14-0.39]). Of the 172 respondents who self-assessed as having had a good aSAH outcome, 122 (71%) had a score of 0-2 on the mRS. Approximately 19% of respondents with a good outcome, based on a measured mRS score of 0-2, self-assessed as having had a poor aSAH outcome. When the mRS score was dichotomized as 0-3 corresponding to a good outcome, agreement between the score and self-assessed outcome remained poor with a Kappa score of 0.40 (CI 0.20-0.60). Approximately 30% of respondents believed that the mRS should not be used as an outcome measure in future aSAH trials. DISCUSSION: The findings suggest that there is poor agreement between aSAH survivors' self-assessed outcome, their actual mRS score, and the dichotomization of the mRS score into good/poor outcomes. Patient-centered and patient-informed outcome measurement tools are needed to guide the aSAH research agenda.

Indexed as

Subarachnoid HemorrhageCross-Sectional StudiesHumansOutcome Assessment, Health CarePatientsRetrospective Studies

Identifiers

PMID36750387
PMCPMC10103120

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