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Cited by 61Medical Coding and Health InformationAcute Ischemic Stroke ManagementStatistical Methods in Epidemiology

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Accuracy of identifying incident stroke cases from linked health care data in UK Biobank

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Rannikmäe, Kristiina, Ngoh, Kenneth, Bush, Kathryn, Al-Shahi Salman, Rustam, Doubal, Fergus, Flaig, Robin, Henshall, David E., Hutchison, Aidan, Nolan, John, Osborne, Scott, Samarasekera, Neshika, Schnier, Christian, Whiteley, Will, Wilkinson, Tim, Wilson, Kirsty, Woodfield, Rebecca, Zhang, Qiuli, Allen, Naomi, Sudlow, Cathie L.M.·2020·Neurology
DOI 10.1212/wnl.0000000000009924PMC PMC7455356
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Abstract

OBJECTIVE: In UK Biobank (UKB), a large population-based prospective study, cases of many diseases are ascertained through linkage to routinely collected, coded national health datasets. We assessed the accuracy of these for identifying incident strokes. METHODS: In a regional UKB subpopulation (n = 17,249), we identified all participants with ≥1 code signifying a first stroke after recruitment (incident stroke-coded cases) in linked hospital admission, primary care, or death record data. Stroke physicians reviewed their full electronic patient records (EPRs) and generated reference standard diagnoses. We evaluated the number and proportion of cases that were true-positives (i.e., positive predictive value [PPV]) for all codes combined and by code source and type. RESULTS: Of 232 incident stroke-coded cases, 97% had EPR information available. Data sources were 30% hospital admission only, 39% primary care only, 28% hospital and primary care, and 3% death records only. While 42% of cases were coded as unspecified stroke type, review of EPRs enabled a pathologic type to be assigned in >99%. PPVs (95% confidence intervals) were 79% (73%-84%) for any stroke (89% for hospital admission codes, 80% for primary care codes) and 83% (74%-90%) for ischemic stroke. PPVs for small numbers of death record and hemorrhagic stroke codes were low but imprecise. CONCLUSIONS: Stroke and ischemic stroke cases in UKB can be ascertained through linked health datasets with sufficient accuracy for many research studies. Further work is needed to understand the accuracy of death record and hemorrhagic stroke codes and to develop scalable approaches for better identifying stroke types.

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Crossref · 10.1212/wnl.0000000000009924

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Figure 1 Selection of included UK Biobank (UKB) participants GP = general practitioner; NHS = National Health Service.
Figure 1 Selection of included UK Biobank (UKB) participants GP = general practitioner; NHS = National Health Service.CC BY · PubMed Central
Figure 2 Positive predictive values (PPVs) of stroke codes PPVs of stroke codes stratified by code source (A) and code type (B). Primary position: includes primary care codes, where no code position is specified, and only primary position hospital admission codes. CI = confidence interval; ICH = intracerebral hemorrhage; SAH = subarachnoid hemorrhage.
Figure 2 Positive predictive values (PPVs) of stroke codes PPVs of stroke codes stratified by code source (A) and code type (B). Primary position: includes primary care codes, where no code position is specified, and only primary position hospital admission codes. CI = confidence interval; ICH = intracerebral hemorrhage; SAH = subarachnoid hemorrhage.CC BY · PubMed Central
Figure 3 Assessing administrative vs overall accuracy High clinical certainty mentions of stroke: “stroke,” “probable stroke,” “presumptive stroke,” “consistent with stroke,” “compatible with stroke,” “likely stroke,” “treated as stroke” or equivalent stroke terms (ICH, SAH, intracerebral hemorrhage, subarachnoid hemorrhage, ischemic stroke, infarct). Medium clinical certainty mentions of stroke: including above plus “possible stroke,” “suspected stroke,” “impression of stroke,” “suggestive of stroke,” “query stroke,” or equivalent stroke terms (ICH, SAH, intracerebral hemorrhage, subarachnoid hemorrhage, ischemic stroke, infarct). Low clinical certainty mentions of stroke include above plus “TIA” and “transient ischaemic attack” with any level of certainty preceding it. The hierarchy of clinical certainty was based on the ICD-10 clinical coding instruction manual (isdscotland.org/Products-and-Services/Terminology-Services/Clinical-Coding- Guidelines/, April 2010 version), which is used by the coding departments in UK hospitals. CI = confidence interval; PPV = positive predictive value.
Figure 3 Assessing administrative vs overall accuracy High clinical certainty mentions of stroke: “stroke,” “probable stroke,” “presumptive stroke,” “consistent with stroke,” “compatible with stroke,” “likely stroke,” “treated as stroke” or equivalent stroke terms (ICH, SAH, intracerebral hemorrhage, subarachnoid hemorrhage, ischemic stroke, infarct). Medium clinical certainty mentions of stroke: including above plus “possible stroke,” “suspected stroke,” “impression of stroke,” “suggestive of stroke,” “query stroke,” or equivalent stroke terms (ICH, SAH, intracerebral hemorrhage, subarachnoid hemorrhage, ischemic stroke, infarct). Low clinical certainty mentions of stroke include above plus “TIA” and “transient ischaemic attack” with any level of certainty preceding it. The hierarchy of clinical certainty was based on the ICD-10 clinical coding instruction manual (isdscotland.org/Products-and-Services/Terminology-Services/Clinical-Coding- Guidelines/, April 2010 version), which is used by the coding departments in UK hospitals. CI = confidence interval; PPV = positive predictive value.CC BY · PubMed Central
Figure 4 Exploratory analyses to improve accuracy of hemorrhagic stroke codes *Excluding other stroke code same day: excluded cases with a diagnostic code for >1 stroke pathologic type on the same day. This was done because a patient who has one pathologic stroke type (e.g., ischemic stroke) can sometimes develop a complication and subsequent brain scan appearances similar to another pathologic stroke type (e.g., a patient with ischemic stroke can have a bleed in the brain as a result of the ischemic stroke, which could lead to a false diagnosis of an intracerebral hemorrhage [ICH]). CI = confidence interval; PPV = positive predictive value; SAH = subarachnoid hemorrhage.
Figure 4 Exploratory analyses to improve accuracy of hemorrhagic stroke codes *Excluding other stroke code same day: excluded cases with a diagnostic code for >1 stroke pathologic type on the same day. This was done because a patient who has one pathologic stroke type (e.g., ischemic stroke) can sometimes develop a complication and subsequent brain scan appearances similar to another pathologic stroke type (e.g., a patient with ischemic stroke can have a bleed in the brain as a result of the ischemic stroke, which could lead to a false diagnosis of an intracerebral hemorrhage [ICH]). CI = confidence interval; PPV = positive predictive value; SAH = subarachnoid hemorrhage.CC BY · PubMed Central

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Authors
Rannikmäe, K., Ngoh, K., Bush, K., Al-Shahi Salman, R., Doubal, F., Flaig, R., Henshall, D. E., Hutchison, A., Nolan, J., Osborne, S., Samarasekera, N., Schnier, C., Whiteley, W., Wilkinson, T., Wilson, K., Woodfield, R., Zhang, Q., Allen, N., & Sudlow, C. L. M.
Affiliations
  • University of Oxford (GB)
  • From the Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics (K.R., K.B., R.F., A.H., J.N., C.S., T.W., K.W., Q.Z., C.L.M.S.), and Centre for Clinical Brain Sciences (R.A.-S.S., F.D., N.S., W.W., R.W.), University of Edinburgh; UK Biobank (K.R., K.B., R.F., A.H., J.N., C.S., T.W., K.W., R.W., Q.Z., N.A., C.L.M.S.), Stockport; University of Edinburgh Medical School (K.N., D.E.H., S.O.); and Nuffield Department of Population Health (N.A.), University of Oxford...
Corresponding author
Rannikmäe, Kristiina
ORCID
Venue
Neurology
Publisher
Ovid Technologies (Wolters Kluwer Health)
Published
2020-08-11
Volume
95
Issue
6
Pages
e697-e707
ISSN
  • 0028-3878 (ISSN-L)
  • 1526-632X
DOI
10.1212/wnl.0000000000009924
PMC
PMC7455356
OpenAlex
W3038575402
Cited by
61
References
14
Citations by year
2026: 11 · 2025: 13 · 2024: 10 · 2023: 10 · 2022: 8 · 2021: 7 · 2020: 1
FWCI
5.71
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Neurology (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Edinburgh Research Explorer (University of Edinburgh) (submittedVersion, other-oa)
  • Zenodo (CERN European Organization for Nuclear Research) (submittedVersion, public-domain)
  • DRYAD (public-domain)
Funders
  • British Heart Foundation (SP/12/2/29422)
  • Scottish Funding Council
  • University of Oxford
  • University of Edinburgh
  • Dementias Platform UK
  • Medical Research Council (MC_PC_17228, MR/P001823/1, MR/S004130/1)
Topics
  • Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
  • Health Sciences › Medicine › Clinical Neurology › Acute Ischemic Stroke Management
  • Physical Sciences › Mathematics › Statistics and Probability › Statistical Methods in Epidemiology
Keywords
incident stroke, positive predictive value, electronic health records, death records, ischemic stroke, hemorrhagic stroke, UK Biobank
MeSH terms
Adult, Aged, Brain Ischemia, Data Collection, Death Certificates, Female, United Kingdom, Hospitalization, Humans, Male, Middle Aged, Patient Admission, Primary Health Care, Prospective Studies, Incidence, Stroke, International Classification of Diseases, Datasets as Topic

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