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Diagnostic error experiences of patients and families with limited English-language health literacy or disadvantaged socioeconomic position in a cross-sectional US population-based survey
  1. Sigall K Bell1,
  2. Joe Dong1,
  3. Long Ngo1,2,
  4. Patricia McGaffigan3,
  5. Eric J Thomas4,
  6. Fabienne Bourgeois5
  1. 1 Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA
  2. 2 Department of Biostatistics, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA
  3. 3 Institute for Healthcare Improvement, Boston, Massachusetts, USA
  4. 4 Department of Medicine, University of Texas John P and Katherine G McGovern Medical School, Houston, Texas, USA
  5. 5 Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Dr Sigall K Bell, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, MA 02215, USA; sbell1{at}bidmc.harvard.edu

Abstract

Background Language barrier, reduced self-advocacy, lower health literacy or biased care may hinder the diagnostic process. Data on how patients/families with limited English-language health literacy (LEHL) or disadvantaged socioeconomic position (dSEP) experience diagnostic errors are sparse.

Method We compared patient-reported diagnostic errors, contributing factors and impacts between respondents with LEHL or dSEP and their counterparts in the 2017 Institute for Healthcare Improvement US population-based survey, using contingency analysis and multivariable logistic regression models for the analyses.

Results 596 respondents reported a diagnostic error; among these, 381 reported LEHL or dSEP. After adjusting for sex, race/ethnicity and physical health, individuals with LEHL/dSEP were more likely than their counterparts to report unique contributing factors: "(No) qualified translator or healthcare provider that spoke (the patient’s) language" (OR and 95% CI 4.4 (1.3 to 14.9)); "not understanding the follow-up plan" (1.9 (1.1 to 3.1)); "too many providers… but no clear leader" (1.8 (1.2 to 2.7)); "not able to keep follow-up appointments" (1.9 (1.1 to 3.2)); "not being able to pay for necessary medical care" (2.5 (1.4 to 4.4)) and "out-of-date or incorrect medical records" (2.6 (1.4 to 4.8)). Participants with LEHL/dSEP were more likely to report long-term emotional, financial and relational impacts, compared with their counterparts. Subgroup analysis (LEHL-only and dSEP-only participants) showed similar results.

Conclusions Individuals with LEHL or dSEP identified unique and actionable contributing factors to diagnostic errors. Interpreter access should be viewed as a diagnostic safety imperative, social determinants affecting care access/affordability should be routinely addressed as part of the diagnostic process and patients/families should be encouraged to access and update their medical records. The frequent and disproportionate long-term impacts from self-reported diagnostic error among LEHL/dSEP patients/families raises urgency for greater prevention and supportive efforts.

  • diagnostic errors
  • healthcare quality improvement
  • patient safety
  • patient-centred care

Data availability statement

Data may be obtained from a third party and are not publicly available. Not applicable.

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Data availability statement

Data may be obtained from a third party and are not publicly available. Not applicable.

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Footnotes

  • Twitter @EJThomas_safety

  • Contributors SKB conceived of the original idea and study design, obtained funding, led the research, drafted the manuscript and serves as the guarantor for the overall content. JD and LN participated in study design, conducted all analyses and are responsible for data results. LN, EJT and FB contributed to writing a grant supporting part of this work. PMcG facilitated access to the IHI dataset. All authors contributed to analysis and interpretation of the data, and have reviewed and commented on the manuscript.

  • Funding This study was funded by Society to Improve Diagnosis in Medicine (165) and Agency for Healthcare Research and Quality (5R01HS027367-02).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.