Natalia V. Oster

Development of a diagnostic test set to assess agreement in breast pathology: practical application of the Guidelines for Reporting Reliability and Agreement Studies (GRRAS)

BackgroundDiagnostic test sets are a valuable research tool that contributes importantly to the validity and reliability of studies that assess agreement in breast pathology. In order to fully understand the strengths and weaknesses of any agreement and reliability study, however, the methods should be fully reported. In this paper we provide a step-by-step description of the methods used to create four complex test sets for a study of diagnostic agreement among pathologists interpreting breast biopsy specimens. We use the newly developed Guidelines for Reporting Reliability and Agreement Studies (GRRAS) as a basis to report these methods.MethodsBreast tissue biopsies were selected from the National Cancer Institute-funded Breast Cancer Surveillance Consortium sites. We used a random sampling stratified according to woman’s age (40–49 vs. ≥50), parenchymal breast density (low vs. high) and interpretation of the original pathologist. A 3-member panel of expert breast pathologists first independently interpreted each case using five primary diagnostic categories (non-proliferative changes, proliferative changes without atypia, atypical ductal hyperplasia, ductal carcinoma in situ, and invasive carcinoma). When the experts did not unanimously agree on a case diagnosis a modified Delphi method was used to determine the reference standard consensus diagnosis. The final test cases were stratified and randomly assigned into one of four unique test sets.ConclusionsWe found GRRAS recommendations to be very useful in reporting diagnostic test set development and recommend inclusion of two additional criteria: 1) characterizing the study population and 2) describing the methods for reference diagnosis, when applicable.

Patients who share transparent visit notes with others: characteristics, risks, and benefits.

Background Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might be. Objective Our goal was to evaluate the characteristics of patients who reported sharing their visit notes during the course of the study, including their views on associated benefits and risks. Methods The OpenNotes study invited patients to access their primary care providers’ visit notes in Massachusetts, Pennsylvania, and Washington. Pre- and post-intervention surveys assessed patient demographics, standardized measures of patient-doctor communication, sharing of visit notes with others during the study, and specific health behaviors reflecting the potential benefits and risks of offering patients easy access to their visit notes. Results More than half (55.43%, 2503/4516) of the participants who reported viewing at least one visit note would like the option of letting family members or friends have their own Web access to their visit notes, and 21.70% (980/4516) reported sharing their visit notes with someone during the study year. Men, and those retired or unable to work, were significantly more likely to share visit notes, and those sharing were neither more nor less concerned about their privacy than were non-sharers. Compared to participants who did not share clinic notes, those who shared were more likely to report taking better care of themselves and taking their medications as prescribed, after adjustment for age, gender, employment status, and study site. Conclusions One in five OpenNotes patients shared a visit note with someone, and those sharing Web access to their visit notes reported better adherence to self-care and medications. As health information technology systems increase patients’ ability to access their medical records, facilitating access to caregivers may improve perceived health behaviors and outcomes.

Maternal Knowledge and Attitudes Toward Influenza Vaccination: A Focus Group Study in Metropolitan Atlanta

Objective. To explore the knowledge and attitudes of mothers of school-aged children toward influenza vaccination and assess what methods of communication about vaccination and its delivery work best among this audience. Methods. The authors conducted focus groups with mothers of school-aged children. Prior to the focus groups, investigators agreed on key themes and discussion points. They independently reviewed transcripts using systematic content analysis and came to an agreement on outcome themes. Results. Many study participants had misunderstandings about influenza vaccines and the definition of influenza. A common perception was that flu is a catch-all term for a variety of undefined illnesses, ranging from a severe cold to stomach upset. Few participants saw a societal benefit in vaccinating children to protect other populations (eg, the elderly). Conclusions. This study represents a first step in understanding how mothers perceive influenza vaccination and for crafting effective communication to increase vaccination among school-aged children.

Self-detection remains a key method of breast cancer detection for U.S. women.

PURPOSE The method by which breast cancer is detected becomes a factor for long-term survival and should be considered in treatment plans. This report describes patient characteristics and time trends for various methods of breast cancer detection in the United States. METHODS The 2003 National Health Interview Survey (NHIS), a nationally representative self-report health survey, included 361 women survivors diagnosed with breast cancer between 1980 and 2003. Responses to the question, How was your breast cancer found? were categorized as accident, self-examination, physician during routine breast examination, mammogram, and other. We examined responses by income, race, age, and year of diagnosis. RESULTS Most women survivors (57%) reported a detection method other than mammographic examination. Women often detected breast cancers themselves, either by self-examination (25%) or by accident (18%). CONCLUSIONS Despite increased use of screening mammography, a large percentage of breast cancers are detected by the patients themselves. Patient-noted breast abnormalities should be carefully evaluated.

Patient portals and personal health information online: perception, access, and use by US adults

Background: Access to online patient portals is key to improving care, but we have limited understanding of patient perceptions of online portals and the characteristics of people who use them. Methods: Using a national survey of 3677 respondents, we describe perceptions and utilization of online personal health information (PHI) portals. Results: Most respondents (92%) considered online PHI access important, yet only 34% were offered access to online PHI by a health care provider, and just 28% accessed online PHI in the past year. While there were no differences across race or ethnicity in importance of access, black and Hispanic respondents were significantly less likely to be offered access (P = .006 and <.001, respectively) and less likely to access their online PHI (P = .041 and <.001, respectively) compared to white and non-Hispanic respondents. Conclusion: Health care providers are crucial to the adoption and use of online patient portals and should be encouraged to offer consistent access regardless of patient race and ethnicity.

Patient Access to Online Visit Notes: Perceptions of Doctors and Patients at an Urban HIV/AIDS Clinic

Patients living with HIV/AIDS face large societal and medical challenges. Inviting patients to read their doctors’ visit notes via secure electronic portals may empower patients and improve health. We investigated whether utilization and perceptions about access to doctors’ notes differed among doctors and patients in an HIV/AIDS clinic versus primary care setting. We analyzed pre- and 1-year postintervention data from 99 doctors and 3819 patients. HIV clinic patients did not report differences in perceived risks and benefits compared to primary care clinic patients, however, they were more likely to share notes with friends (33% versus 9%, P = .002), other health professionals (24% versus 8%, P = .03), or another doctor (38% versus 9%, P < .0001). HIV clinic doctors were less likely than primary care doctors to change the level of candor in visit notes (P < .04). Our findings suggest that HIV clinic patients and doctors are ready to share visit notes online.

Characteristics of Patients Who Report Confusion After Reading Their Primary Care Clinic Notes Online

ABSTRACT Patient access to online electronic medical records (EMRs) is increasing and may offer benefits to patients. However, the inherent complexity of medicine may cause confusion. We elucidate characteristics and health behaviors of patients who report confusion after reading their doctors’ notes online. We analyzed data from 4,528 patients in Boston, MA, central Pennsylvania, and Seattle, WA, who were granted online access to their primary care doctors’ clinic notes and who viewed at least one note during the 1-year intervention. Three percent of patients reported confusion after reading their visit notes. These patients were more likely to be at least 70 years of age (p < .0001), have fewer years of education (p < .0017), be unemployed (p < .0001), have lower levels of self-reported health (p < .0043), and worry more after reading visit notes (relative risk [RR] 4.83; confidence interval [CI] 3.17, 7.36) compared to patients who were not confused. In adjusted analyses, they were less likely to report feeling more in control of their health (RR 0.42; CI 0.25, 0.71), remembering their care plan (RR 0.26; CI 0.17, 0.42), and understanding their medical conditions (RR 0.32; CI 0.19, 0.54) as a result of reading their doctors’ notes compared to patients who were not confused. Patients who were confused by reading their doctors’ notes were less likely to report benefits in health behaviors. Understanding this small subset of patients is a critical step in reducing gaps in provider–patient communication and in efforts to tailor educational approaches for patients.

Identifying and processing the gap between perceived and actual agreement in breast pathology interpretation

We examined how pathologists’ process their perceptions of how their interpretations on diagnoses for breast pathology cases agree with a reference standard. To accomplish this, we created an individualized self-directed continuing medical education program that showed pathologists interpreting breast specimens how their interpretations on a test set compared with a reference diagnosis developed by a consensus panel of experienced breast pathologists. After interpreting a test set of 60 cases, 92 participating pathologists were asked to estimate how their interpretations compared with the standard for benign without atypia, atypia, ductal carcinoma in situ and invasive cancer. We then asked pathologists their thoughts about learning about differences in their perceptions compared with actual agreement. Overall, participants tended to overestimate their agreement with the reference standard, with a mean difference of 5.5% (75.9% actual agreement; 81.4% estimated agreement), especially for atypia and were least likely to overestimate it for invasive breast cancer. Non-academic affiliated pathologists were more likely to more closely estimate their performance relative to academic affiliated pathologists (77.6 vs 48%; P=0.001), whereas participants affiliated with an academic medical center were more likely to underestimate agreement with their diagnoses compared with non-academic affiliated pathologists (40 vs 6%). Before the continuing medical education program, nearly 55% (54.9%) of participants could not estimate whether they would overinterpret the cases or underinterpret them relative to the reference diagnosis. Nearly 80% (79.8%) reported learning new information from this individualized web-based continuing medical education program, and 23.9% of pathologists identified strategies they would change their practice to improve. In conclusion, when evaluating breast pathology specimens, pathologists do a good job of estimating their diagnostic agreement with a reference standard, but for atypia cases, pathologists tend to overestimate diagnostic agreement. Many participants were able to identify ways to improve.

Patients Typing Their Own Visit Agendas Into an Electronic Medical Record: Pilot in a Safety-Net Clinic

Collaborative visit agenda setting between patient and doctor is recommended. We assessed the feasibility, acceptability, and utility of patients attending a large primary care safety-net clinic typing their agendas into the electronic visit note before seeing their clinicians. One hundred and one patients and their 28 clinicians completed post-visit surveys. Patients and clinicians agreed that the agendas improved patient-clinician communication (patients 79%, clinician 74%), and wanted to continue having patients type agendas in the future (73%, 82%). Enabling patients to type visit agendas may enhance care by engaging patients and giving clinicians an efficient way to prioritize patients’ concerns.

Demographic and practice characteristics of pathologists who enjoy breast tissue interpretation

Physician attributes, job satisfaction and confidence in clinical skills are associated with enhanced performance and better patient outcomes. We surveyed 252 pathologists to evaluate associations between enjoyment of breast pathology, demographic/clinical characteristics and diagnostic performance. Diagnostic performance was determined by comparing pathologist assessments of a set of 60 cases with consensus assessments of the same cases made by a panel of experienced pathologists. Eighty-three percent of study participants reported enjoying breast pathology. Pathologists who enjoy breast interpretation were more likely to review ≥10 cases/week (p = 0.003), report breast interpretation expertise (p = 0.013) and have high levels of confidence interpreting breast pathology (p < 0.001). These pathologists were less likely to report that the field was challenging (p < 0.001) and that breast cases make them more nervous than other types of pathology (p < 0.001). Enjoyment was not associated with diagnostic performance. Millions of women undergo breast biopsy annually, thus it is reassuring that although nearly a fifth of practicing pathologists who interpret breast tissue report not enjoying the field, precision is not impacted.