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Patient comprehension of breast pathology report terminology: The need for patient-centered resources

      Abstract

      Background

      As health care continues to evolve toward information transparency, an increasing number of patients have access to their medical records, including result reports that were not originally designed to be patient-facing. Previous studies have demonstrated that patients have poor understanding of medical terminology. However, patient comprehension of terminology specific to breast pathology reports has not been well studied. We assessed patient understanding of common medical terms found in breast pathology reports.

      Methods

      A survey was administered electronically to patients scheduled for a screening mammogram within a multisite health care system. Participants were asked to objectively define and interpret 8 medical terms common to breast biopsy pathology reports. Patient perception of the utility of various educational tools was also assessed. Demographic information including health literacy, education level, previous cancer diagnosis, and primary language was collected.

      Results

      In total, 527 patients completed the survey. Terms including “malignant” and “benign” were the most correctly defined at 80% and 73%, respectively, whereas only 1% correctly defined “high grade.” Factors including race/ethnicity and education level were correlated with more correct scores. Patients preferred educational tools that were specific to their diagnosis and available at the time they were reviewing their results.

      Conclusion

      Patient comprehension of common medical terminology is poor. Potential assumptions of understanding based on patient factors including education, past medical history, and occupation are misinformed. With the newly mandated immediate release of information to patients, there is a pressing need to develop and integrate educational tools to support patients through all aspects of their care.
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      References

        • Blumenthal D.
        Launching HITECH.
        N Engl J Med. 2010; 362: 382-385
        • Evans R.S.
        Electronic health records: then, now, and in the future.
        Yearb Med Inform. 2016; : S48-S61
        • Shucard H.
        • Piepkorn M.W.
        • Reisch L.M.
        • et al.
        Dermatopathologists experience with and perceptions of patient online access to pathologic test result reports.
        JAMA Dermatol. 2020; 156: 320-324
        • Johnson A.J.
        • Easterling D.
        • Nelson R.
        • Chen M.Y.
        • Frankel R.M.
        Access to radiologic reports via a patient portal: clinical simulations to investigate patient preferences.
        J Am Coll Radiol. 2012; 9: 256-263
        • Walker J.
        • Leveille S.
        • Bell S.
        • et al.
        OpenNotes after 7 years: patient experiences with ongoing access to their clinicians’ outpatient visit notes.
        J Med Internet Res. 2019; 21 (Erratum in: J Med Internet Res. 2020;22:e18639)e13876
      1. 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program, 45 CFR § 170.402 (2020).

        • Mehan Jr., W.A.
        • Brink J.A.
        • Hirsch J.A.
        21st Century Cures Act: patient-facing implications of information blocking.
        J Am Coll Radiol. 2021; (S1546-1440(21)00111-00113)
        • Mossanen M.
        • Calvert J.K.
        • Wright J.L.
        • True L.D.
        • Lin D.W.
        • Gore J.L.
        Readability of urologic pathology reports: the need for patient-centered approaches.
        Urol Oncol. 2014; 32: 1091-1094
        • Leonard L.D.
        • Himelhoch B.
        • Huynh V.
        • Wolverton D.
        • Jaiswal K.
        • Ahrendt G.
        • Sams S.
        • Cumbler E.
        • Schulick R.
        • Tevis S.E.
        Patient and clinician perceptions of the immediate release of electronic health information.
        Am J Surg. 2021; (S0002-9610(21)00728-5)
        • Bagley C.H.
        • Hunter A.R.
        • Bacarese-Hamilton I.A.
        Patients’ misunderstanding of common orthopaedic terminology: the need for clarity.
        Ann R Coll Surg Engl. 2011; 93: 401-404
        • Cosic F.
        • Kimmel L.
        • Edwards E.
        Patient comprehension of common orthopedic terminology.
        Health Lit Res Pract. 2019; 3: e187-e193
        • Mittl G.S.
        • Cook T.S.
        • Hill P.A.
        • et al.
        patient understanding of abnormal imaging findings under Pennsylvania Act 112: a call to revise mandated notification message language.
        J Am Coll Radiol. 2021; 18: 951-961
        • O’Connell R.L.
        • Hartridge-Lambert S.K.
        • Din N.
        • St John E.R.
        • Hitchins C.
        • Johnson T.
        Patients’ understanding of medical terminology used in the breast clinic.
        Breast. 2013; 22: 836-838
        • Dua R.
        • Vassiliou L.
        • Fan K.
        Common maxillofacial terminology: do our patients understand what we say?.
        Surgeon. 2015; 13: 1-4
        • Austin E.J.
        • Lee J.R.
        • Bergstedt B.
        • et al.
        “Help me figure this out”: qualitative explorations of patient experiences with cancer pathology reports.
        Patient Educ Couns. 2021; 104: 40-44
        • Nickel B.
        • Barratt A.
        • Hersch J.
        • Moynihan R.
        • Irwig L.
        • McCaffery K.
        How different terminology for ductal carcinoma in situ (DCIS) impacts women’s concern and management preferences: a qualitative study.
        Breast. 2015; 24: 673-679
        • Rakovitch E.
        • Franssen E.
        • Kim J.
        • et al.
        A comparison of risk perception and psychological morbidity in women with ductal carcinoma in situ and early invasive breast cancer.
        Breast Cancer Res Treat. 2003; 77: 285-293
        • Omer Z.
        • Hwang E.S.
        • Esserman L.J.
        • Ozanne E.M.
        P5-15-01: Words matter: influence of DCIS diagnosis terminology on patient treatment decisions.
        Cancer Res. 2011; 71 (P5-15-01)
        • Chew L.D.
        • Griffin J.M.
        • Partin M.R.
        • et al.
        Validation of screening questions for limited health literacy in a large VA outpatient population.
        J Gen Intern Med. 2008; 23: 561-566
      2. The American Cancer Society. Words to describe cancer and its treatment. American Cancer Society. April 27, 2015. Accessed June 11, 2022. https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-treatment/words-to-use.html

      3. National Institutes of Health. NCI Dictionary of Cancer terms. Accessed June 11, 2022. https://www.cancer.gov/publications/dictionaries/cancer-terms.

        • Shen M.J.
        • Peterson E.B.
        • Costas-Muñiz R.
        • et al.
        The effects of race and racial concordance on patient-physician communication: a systematic review of the literature.
        J Racial Ethn Health Disparities. 2018; 5: 117-140
        • Penner L.A.
        • Eggly S.
        • Griggs J.J.
        • Underwood III, W.
        • Orom H.
        • Albrecht T.L.
        Life-threatening disparities: the treatment of Black and White cancer patients.
        J Soc Issues. 2012;
        • Svantesson M.
        • Carlsson E.
        • Prenkert M.
        • Anderzén-Carlsson A.
        “Just so you know, the patient is staff”: healthcare professionals’ perceptions of caring for healthcare professional-patients.
        BMJ Open. 2016; 6e008507
        • Teng K.A.
        • Butler R.S.
        • Schramm S.
        • Isaacson J.H.
        • Nielsen C.
        • Paradis C.
        Physicians caring for physicians: the perspective of the primary care physician.
        South Med J. 2014; 107: 301-305
        • Jeannot J.G.
        • Froehlich F.
        • Wietlisbach V.
        • Burnand B.
        • Terraz O.
        • Vader J.P.
        Patient use of the internet for health care information in Switzerland.
        Swiss Med Week. 2004; 134: 307e12
        • Quinn E.M.
        • Corrigan M.A.
        • McHugh S.M.
        • et al.
        Breast cancer information on the internet: analysis of accessibility and accuracy.
        Breast. 2012; 21: 514-517
        • Brachtenbach T.
        • Cardenas R.
        • Pate H.
        • et al.
        YouTube: searching for answers about breast cancer.
        Breast Dis. 2020; 39: 85-90
        • Brown C.E.
        • Roberts N.J.
        • Partridge M.R.
        Does the use of a glossary aid patient understanding of the letters sent to their general practitioner?.
        Clin Med (Lond). 2007; 7: 457-460
        • Mandelblatt J.
        • Kreling B.
        • Figeuriedo M.
        • Feng S.
        What is the impact of shared decision making on treatment and outcomes for older women with breast cancer?.
        J Clin Oncol. 2006; 24: 4908-4913
        • Deber R.B.
        • Kraetschumer H.
        • Urowitz S.
        • Sharpe N.
        Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations.
        Health Expect. 2007; 10: 248-258
        • Wallberg B.
        • Michelson H.
        • Nystedt M.
        • Bolund C.
        • Degner L.F.
        • Wilking N.
        Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients.
        . 2000; 39: 467-476
        • Blease C.
        • Fernandez L.
        • Bell S.K.
        • Delbanco T.
        • DesRoches C.
        Empowering patients and reducing inequities: is there potential in sharing clinical notes?.
        BMJ Qual Saf. 2020; 29: 1-2
        • Spriggs M.
        • Arnold M.V.
        • Pearce C.M.
        • Fry C.
        Ethical questions must be considered for electronic health records.
        J Med Ethics. 2012; 38: 535-539
        • Lyles C.R.
        • Fruchterman J.
        • Youdelman M.
        • Schillinger D.
        Legal, practical, and ethical considerations for making online patient portals accessible for all.
        Am J Public Health. 2017; 107: 1608-1611
        • Lorenc T.
        • Petticrew M.
        • Welch V.
        • Tugwell P.
        What types of interventions generate inequalities? Evidence from systematic reviews.
        J Epidemiol Community Health. 2013; 67: 190-193
        • Roy M.
        • Purington N.
        • Liu M.
        • Blayney D.W.
        • Kurian A.W.
        • Schapira L.
        Limited English proficiency and disparities in health care engagement among patients with breast cancer.
        JCO Oncol Pract. 2021 Apr; 17: e1837-e1845