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Cited by 26Medical Coding and Health InformationElectronic Health Records SystemsRheumatoid Arthritis Research and Therapies

What evidence is there for a delay in diagnostic coding of RA in UK general practice records? An observational study of free text

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Ford, Elizabeth, Carroll, John, Smith, Helen, Davies, Kevin, Koeling, Rob, Petersen, Irene, Rait, Greta, Cassell, Jackie·2016·BMJ Open
DOI 10.1136/bmjopen-2015-010393PMC PMC4932264
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Abstract

Objectives: Much research with electronic health records (EHRs) uses coded or structured data only; important information captured in the free text remains unused. One dimension of EHR data quality assessment is ‘currency’ or timeliness, that is, data are representative of the patient state at the time of measurement. We explored the use of free text in UK general practice patient records to evaluate delays in recording of rheumatoid arthritis (RA) diagnosis. We also aimed to locate and quantify disease and diagnostic information recorded only in text. Setting: UK general practice patient records from the Clinical Practice Research Datalink. Participants: 294 individuals with incident diagnosis of RA between 2005 and 2008; 204 women and 85 men, median age 63 years. Primary and secondary outcome measures: Assessment of (1) quantity and timing of text entries for disease-modifying antirheumatic drugs (DMARDs) as a proxy for the RA disease code, and (2) quantity, location and timing of free text information relating to RA onset and diagnosis. Results: Inflammatory markers, pain and DMARDs were the most common categories of disease information in text prior to RA diagnostic code; 10–37% of patients had such information only in text. Read codes associated with RA-related text included correspondence, general consultation and arthritis codes. 64 patients (22%) had DMARD text entries >14 days prior to RA code; these patients had more and earlier referrals to rheumatology, tests, swelling, pain and DMARD prescriptions, suggestive of an earlier implicit diagnosis than was recorded by the diagnostic code. Conclusions: RA-related symptoms, tests, referrals and prescriptions were recorded in free text with 22% of patients showing strong evidence of delay in coding of diagnosis. Researchers using EHRs may need to mitigate for delayed codes by incorporating text into their case-ascertainment strategies. Natural language processing techniques have the capability to do this at scale.

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  • Documentation timestamps reflect when events are recorded rather than when they occur, introducing systematic errors that can distort event sequencing, bias time-to-event analyses, and undermine model validity.

    “Documentation timestamps are often used as surrogates for disease onset; however, they reflect when events are recorded rather than when they occur, introducing systematic errors that can distort event sequencing, bias time-to-event analyses, and undermine model validity9–12.”

    From TimeX: Phenotype Onset Extraction from Clinical Narratives (2026) · cites this paper as [10]

    The Results (DMARD in text as a proxy for RA diagnosis) and Conclusions show that RA diagnostic codes can be entered well after earlier evidence of disease, so a code’s date may not mark disease onset. The paper discusses implications for case ascertainment and incidence estimates, but does not establish that this delay distorts event sequencing, biases time-to-event analyses, or undermines model validity. (LLM, conf=0.85)

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Research works printed but not linked: 32

  1. [2]Edwards CJ, Arden NK, Fisher D The changing use of disease-modifying anti-rheumatic drugs in individuals with rheumatoid arthritis from the United Kingdom General Practice Research Database. Rheumatology 2005; 44: 1394– 8. 10.1093/rheumatology/kei024 16030083 · DOI
  2. [3]Smitten AL, Choi HK, Hochberg MC The risk of herpes zoster in patients with rheumatoid arthritis in the United States and the United Kingdom. Arthritis Care Res 2007; 57: 1431– 8. 10.1002/art.23112 18050184 · DOI
  3. [4]Dixon WG, Abrahamowicz M, Beauchamp M-E Immediate and delayed impact of oral glucocorticoid therapy on risk of serious infection in older patients with rheumatoid arthritis: a nested case–control analysis. Ann Rheum Dis 2012; 71: 1128– 33. 10.1136/annrheumdis-2011-200702 22241902 PMC3375584 · DOI
  4. [5]Edwards CJ, Campbell J, van Staa T Regional and temporal variation in the treatment of rheumatoid arthritis across the UK: a descriptive register-based cohort study. BMJ Open 2012; 2: e001603 10.1136/bmjopen-2012-001603 PMC3533005 23144258 · DOI
  5. [6]Judge A, Wallace G, Prieto-Alhambra D Can the publication of guidelines change the management of early rheumatoid arthritis? An interrupted time series analysis from the United Kingdom. Rheumatology (Oxford) 2015; 54: 2244– 8. 10.1093/rheumatology/kev268 26242858 · DOI
  6. [7]Black RJ, Joseph RM, Brown B Half of UK patients with rheumatoid arthritis are prescribed oral glucocorticoid therapy in primary care: a retrospective drug utilisation study. Arthritis Res Ther 2015; 17: 545 10.1186/s13075-015-0895-8 PMC4718024 26702817 · DOI
  7. [8]Miller A, Nightingale AL, Sammon CJ Estimating the diagnostic accuracy of rheumatoid factor in UK primary care: a study using the Clinical Practice Research Datalink. Rheumatology (Oxford) 2015; 54: 1882– 9. 10.1093/rheumatology/kev131 26060323 · DOI
  8. [9]Edwards CJ, Cooper C, Fisher D The importance of the disease process and disease-modifying antirheumatic drug treatment in the development of septic arthritis in patients with rheumatoid arthritis. Arthritis Care Res 2007; 57: 1151– 7. 10.1002/art.23003 17907232 · DOI
  9. [10]Simon TA, Smitten AL, Franklin J Malignancies in the rheumatoid arthritis abatacept clinical development programme: an epidemiological assessment. Ann Rheum Dis 2009; 68: 1819– 26. 10.1136/ard.2008.097527 19054822 PMC2770103 · DOI
  10. [11]Booth N What are the read codes? Health Libr Rev 1994; 11: 177– 82. 10.1046/j.1365-2532.1994.1130177.x 10139676 · DOI
  11. [12]Davé S, Petersen I Creating medical and drug code lists to identify cases in primary care databases. Pharmacoepidemiol Drug Saf 2009; 18: 704– 7. 10.1002/pds.1770 19455565 · DOI
  12. [14]Dungey S, Beloff N, Puri S A pragmatic approach for measuring data quality in primary care databases. IEEE-EMBS International Conference on Biomedical and Health Informatics (BHI), 2014; 1–4 June 2014: 797– 800.
  13. [15]Manuel DG, Rosella LC, Stukel TA Importance of accurately identifying disease in studies using electronic health records. BMJ 2010; 341: c4226 10.1136/bmj.c4226 20724404 · DOI · Paper page
  14. [16]Thomas SL, Edwards CJ, Smeeth L How accurate are diagnoses for rheumatoid arthritis and juvenile idiopathic arthritis in the general practice research database? Arthritis Rheum 2008; 59: 1314– 21. 10.1002/art.24015 18759262 · DOI
  15. [17]Ford E, Nicholson A, Koeling R Optimising the use of electronic health records to estimate the incidence of rheumatoid arthritis in primary care: what information is hidden in free text? BMC Med Res Methodol 2013; 13: 105 10.1186/1471-2288-13-105 23964710 PMC3765394 · DOI
  16. [18]de Lusignan S, Wells SE, Hague NJ Managers see the problems associated with coding clinical data as a technical issue whilst clinicians also see cultural barriers. Methods Inf Med 2003; 42: 416– 22. 10.1267/METH03040416 14534643 · DOI
  17. [19]Tate AR, Martin AGR, Ali A Using free text information to explore how and when GPs code a diagnosis of ovarian cancer: an observational study using primary care records of patients with ovarian cancer. BMJ Open 2011; 1: e000025 10.1136/bmjopen-2010-000025 PMC3191398 22021731 · DOI
  18. [20]Tate AR, Martin AG, Murray-Thomas T Determining the date of diagnosis—is it a simple matter? The impact of different approaches to dating diagnosis on estimates of delayed care for ovarian cancer in UK primary care. BMC Med Res Methodol 2009; 9: 42 10.1186/1471-2288-9-42 19549322 PMC2711114 · DOI
  19. [21]Liao KP, Cai T, Gainer V Electronic medical records for discovery research in rheumatoid arthritis. Arthritis Care Res 2010; 62: 1120– 7. 10.1002/acr.20184 PMC3121049 20235204 · DOI
  20. [22]Helmick CG, Felson DT, Lawrence RC Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: part I. Arthritis Rheum 2008; 58: 15– 25. 10.1002/art.23177 18163481 · DOI
  21. [23]Charles J, Britt H, Pan Y Rheumatoid Arthritis. Aust Fam Physician 2013; 42: 765. 24217093
  22. [24]Aletaha D, Neogi T, Silman AJ 2010 Rheumatoid arthritis classification criteria: an American College of Rheumatology/European League Against Rheumatism collaborative initiative. Arthritis Rheum 2010; 62: 2569– 81. 10.1002/art.27584 20872595 · DOI
  23. [25]Palferman TG Principles of rheumatoid arthritis control. J Rheumatol 2003; 30(Suppl 67): 10– 13. 12926645
  24. [26]Boers M Rheumatoid arthritis: treatment of early disease. Rheum Dis Clin North Am 2001; 27: 405– 14. 10.1016/S0889-857X(05)70209-X 11396100 · DOI
  25. [28]Luqmani R, Hennell S, Estrach C British Society for Rheumatology and British Health Professionals in Rheumatology guideline for the management of rheumatoid arthritis (the first two years). Rheumatology 2006; 45: 1167– 9. 10.1093/rheumatology/kel215a 16844700 · DOI
  26. [29]Williams T, van Staa T, Puri S Recent advances in the utility and use of the General Practice Research Database as an example of a UK Primary Care Data resource. Ther Adv Drug Saf 2012; 3: 89– 99. 10.1177/2042098611435911 25083228 PMC4110844 · DOI
  27. [30]Chisholm J The Read clinical classification. BMJ 1990; 300: 1092 10.1136/bmj.300.6732.1092 2344534 PMC1662793 · DOI · Paper page
  28. [31]Nicholson A, Ford E, Davies K Optimising use of electronic health records to describe the presentation of rheumatoid arthritis in primary care: a strategy for developing code lists. PLoS ONE 2013; 8: e54878 10.1371/journal.pone.0054878 23451024 PMC3579840 · DOI
  29. [32]Lu CJ, Divita G, Browne AC Development of visual tagging tool. AMIA 2010 Annual Symposium; 2010, Washington DC, 13–17 November 2010: 1156.
  30. [33]Ford E, Carroll JA, Smith HE Extracting information from the text of electronic medical records to improve case detection: a systematic review. J Am Med Inform Assoc 2016 10.1093/jamia/ocv180 10.1093/jamia/ocv180 PMC4997034 26911811 · DOI
  31. [34]Meystre SM, Friedlin FJ, South BR Automatic de-identification of textual documents in the electronic health record: a review of recent research. BMC Med Res Methodol 2010; 10: 70 10.1186/1471-2288-10-70 20678228 PMC2923159 · DOI
  32. [35]Imfeld P, Pernus YB, Jick SS Epidemiology, co-morbidities, and medication use of patients with Alzheimer's disease or vascular dementia in the UK. J Alzheimers Dis 2013; 35: 565– 73. 10.3233/JAD-121819 23455986 · DOI

Cited by

Sorted by citations

Authors
Ford, E., Carroll, J., Smith, H., Davies, K., Koeling, R., Petersen, I., Rait, G., & Cassell, J.
Affiliations
  • Brighton and Sussex Medical School (GB)
  • University of Sussex (GB)
  • Aarhus University (DK)
  • University College London (GB)
Corresponding author
Ford, Elizabeth
ORCID
Venue
BMJ Open
Publisher
BMJ
Published
2016-06
Volume
6
Issue
6
Pages
e010393
ISSN
2044-6055 (ISSN-L)
DOI
10.1136/bmjopen-2015-010393
PMC
PMC4932264
OpenAlex
W2463867832
Cited by
26
References
2
Citations by year
2026: 1 · 2024: 5 · 2023: 4 · 2022: 1 · 2021: 2 · 2020: 3 · 2019: 2 · 2018: 3 · 2017: 5
FWCI
5.67
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • BMJ Open (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Sussex Research Online (University of Sussex) (submittedVersion, cc-by)
  • UCL Discovery (University College London) (submittedVersion)
  • HighWire Press Open Archive (submittedVersion)
Funders
  • Wellcome Trust (086105/Z/08/Z)
  • Medical Research Council (MR/K006525/1)
Topics
  • Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
  • Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
  • Health Sciences › Medicine › Rheumatology › Rheumatoid Arthritis Research and Therapies
Keywords
rheumatoid arthritis, unstructured text, electronic health records, data timeliness, disease-modifying antirheumatic drugs, general practice records, case ascertainment, natural language processing, rheumatology referral, Clinical Practice Research Datalink
MeSH terms
Adult, Aged, Arthritis, Rheumatoid, Female, United Kingdom, Humans, Male, Middle Aged, Antirheumatic Agents, Delayed Diagnosis, Electronic Health Records, General Practice, Clinical Coding, Time-to-Treatment

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