American BRCA Outcomes and Utilization of Testing (ABOUT) study: a pragmatic research model that incorporates personalized medicine/patient-centered outcomes in a real world setting.

Research to date regarding identification and management of hereditary breast and ovarian cancer syndrome (HBOC) in the U.S. has been confined primarily to academic center-based studies with limited patient engagement. To begin to understand and address the current gaps and disparities in delivery of services for the appropriate identification and optimal risk management of individuals with HBOC, we designed and have initiated the American BRCA Outcomes and Utilization of Testing (ABOUT) Study. ABOUT relies on a collaborative patient advocacy, academic and industry partnership to recruit and engage U.S. individuals who are at increased risk for HBOC and investigate their experiences, decisions and outcomes. It utilizes an extensive research infrastructure, including an interactive web-based data system and electronic interfaces for secure online participation and automated data exchange. We describe the novel recruitment approach that was designed for collaboration with a national commercial health plan partner to identify all individuals for whom a healthcare provider orders a BRCA test and mail to each individual an invitation to participate and study packet. The study packet contains detailed information about the study, a baseline questionnaire and informed consent for participation in the study, for release of relevant medical and health plan records and for ongoing research engagement. This approach employs patient-reported, laboratory-reported and health plan-reported outcomes and facilitates longitudinal engagement. We believe that the type of innovative methodology and collaborative framework we have developed for ABOUT is an ideal foundation for a patient-powered research network. This approach can make substantial contributions to identifying current and best practices in HBOC, leading to improved strategies for clinical care and optimal health outcomes among individuals with high inherited risk for cancer.

Cancer-related information behavior among Black and Hispanic populations in an NCI-designated comprehensive cancer center catchment.

OBJECTIVE: This study aims to better understand health behaviors, particularly health information seeking, and how this impacts cancer care within underserved minority populations in a specific catchment area in Florida. METHODS: We conducted an analysis of survey data from a 2019 community health survey conducted by the Moffit Cancer Center (MCC). We utilized the Comprehensive Model of Information Seeking (CMIS) as a framework and performed structural equation modeling (SEM) and related statistical analyses. RESULTS: Our findings confirm that characteristics and demographics present a positive relationship to Online Health Information Seeking (OHIS). We also found that Utility had a negative significant relationship to OHIS. CONCLUSIONS: We concluded that the CMIS is a useful framework for studying cancer-related information seeking, and that when properly executed in the confines of a study, can lend itself to in-depth statistical analyses as found in SEM. IMPLICATIONS: The SEM revealed the CMIS to be promising with results in our analysis worthy of further investigation of cancer care and healthcare information access considering undeserved and minority populations. PRACTICE IMPLICATIONS: Models such as the CMIS can be useful for understanding information seeking behaviors and to design information and communication interventions to improve access and health outcomes.

Nasoseptal Surgery Outcomes in Smokers and Nonsmokers.

Background: Many surgeons refuse to perform elective nasal surgery in active smokers, but little literature exists that addresses the risks of doing so; we sought to quantify the differences in outcomes after nasal surgery among smokers, previous smokers, and nonsmokers by measuring complication rates, revision rates, and improvement in Nasal Obstruction Symptom Evaluation (NOSE) scores. Methods: We performed a single institution retrospective review of patients undergoing nasoseptal surgery. Specifically, we noted demographic characteristics, smoking status, surgery type, and pre- and postoperative NOSE scores. We compared NOSE scores, complication rates, and revision rates among current smokers, previous smokers, and never smokers. Results: Five hundred thirty patients were included for complication and revision rate analysis; there was no difference in complication or revision rates among patients of different smoking categories. Two hundred ninety-one patients completed pre- and postoperative NOSE scores. Scores for all surgeries and in all smoking categories improved postoperatively (p < 0.001). There was a difference in NOSE score change among surgical groups, with rhinoplasty resulting in the greatest improvement (p = 0.044). There was no difference in NOSE score improvement across smoking categories. Conclusion: Active smokers benefit from surgical intervention and can expect a similar improvement in nasal breathing to their nonsmoking counterparts if they meet indications for and undergo nasal surgery.

Utilization, Timing, and Outcomes of BRCA Genetic Testing Among Women With Newly Diagnosed Breast Cancer From a National Commercially Insured Population: The ABOARD Study.

PURPOSE: To evaluate timing and outcomes of BRCA testing and definitive surgical treatment among patients with newly diagnosed breast cancer. METHODS: Patient-reported (n = 1,381) and deidentified health-plan (n = 2,369) data were analyzed from a consecutive national series of 3,750 women whose healthcare providers ordered BRCA testing between March 2014 and June 2015, within 1 year following breast cancer diagnosis. RESULTS: Among 1,209 respondents, 54.4% received the genetic test results presurgery, 23.2% tested presurgery but received the results postsurgery, and 22.3% tested postsurgery. Patients aware of mutation-positive results presurgery were more likely to choose bilateral mastectomy (BLM) (n = 32/37) compared with patients who learned of positive results postsurgery (n = 14/32), (odds ratio [OR] = 8.23, 95% CI = 2.55 to 26.59, P < .001). When compared with women tested postsurgery, only women unaware of negative results presurgery had higher BLM rates (adjusted OR = 1.70, 95% CI = 1.07 to 2.69, P = .02). Among women > 50 tested presurgery, those unaware of negative results presurgery were more likely to choose BLM (n = 28/81) compared with those aware of negative results (n = 32/168) (OR = 2.25, 95% CI = 1.23 to 4.08, negative results awareness × age interaction, and P = .007). CONCLUSION: Nearly half of participants did not receive BRCA results presurgery, which limited their ability to make fully informed surgical treatment decisions. This may represent suboptimal care for unaware mutation-positive patients compared with those who were aware presurgery. Women > 50 who test negative are significantly less likely to choose BLM, a costly surgery that does not confer survival advantage, if they are aware of negative results presurgery. These results have important implications for quality of care and costs in the US health system.

Comparing heterogeneous SNOMED CT coding of clinical research concepts by examining normalized expressions.

OBJECTIVE: A continual problem confronting the implementation of standardized vocabularies such as SNOMED CT is that their expressive flexibility and power provide more than one way to represent a given concept. The goal of this study was to investigate how the CliniClue Expression Transformer tool could be used to help in discerning similarities and differences among three separate sets of clinical research concepts coded in SNOMED CT by three different paid expert coding companies. METHODS: Initial editing of the companies' coded datasets was required to enable accurate input into CliniClue Version: 2006.2.0030 Expression Transformer tool. The normal forms of the company codings for the 319 clinical research question/answer sets were compared to determine whether they were equivalent or otherwise related (e.g., if one was subsumed by the other). Basic frequencies were computed for (957) pairwise comparisons of each of 319 concepts each coded by the three expert coders, and the implications of the results discussed. RESULTS: The primary finding from this study was that, for each of the paired comparisons, approximately half of the time the companies' codings could be related, primarily via subsumption. The greatest percentage of equivalent concepts between any two companies was 33%. These same two companies also agreed most often on the core clinical concept measure from an earlier study by the authors. CONCLUSION: Heterogeneity among coders using the same controlled terminology appears inescapable despite the extensive efforts of terminological standards developers and implementers. In our study, the computable determination of equivalence of discordantly coded concepts still failed to yield acceptably comparable data. A clearer articulation, and perhaps a simplification, of rules for the consistent use for terminologies such as SNOMED CT is needed.

Variation of SNOMED CT coding of clinical research concepts among coding experts.

OBJECTIVE: To compare consistency of coding among professional SNOMED CT coders representing three commercial providers of coding services when coding clinical research concepts with SNOMED CT. DESIGN: A sample of clinical research questions from case report forms (CRFs) generated by the NIH-funded Rare Disease Clinical Research Network (RDCRN) were sent to three coding companies with instructions to code the core concepts using SNOMED CT. The sample consisted of 319 question/answer pairs from 15 separate studies. The companies were asked to select SNOMED CT concepts (in any form, including post-coordinated) that capture the core concept(s) reflected in the question. Also, they were asked to state their level of certainty, as well as how precise they felt their coding was. MEASUREMENTS: Basic frequencies were calculated to determine raw level agreement among the companies and other descriptive information. Krippendorff's alpha was used to determine a statistical measure of agreement among the coding companies for several measures (semantic, certainty, and precision). RESULTS: No significant level of agreement among the experts was found. CONCLUSION: There is little semantic agreement in coding of clinical research data items across coders from 3 professional coding services, even using a very liberal definition of agreement.

Information seeking and intentions to have genetic testing for hereditary cancers in rural and Appalachian Kentuckians.

CONTEXT: Research is limited regarding the potential of genetic testing for cancer risk in rural Appalachia. PURPOSE: This study examined perceptions of genetic testing in a population sample of Kentuckians, with a focus on Appalachian and rural differences. The goals were to examine cultural and psychosocial factors that may predict intentions to test for hereditary cancer, need for help with information seeking for decision making about genetic testing for hereditary cancer, and amount of help needed with information seeking for decision making about genetic testing for hereditary cancer in this population. METHODS: Analysis of data from a general social survey of adults using random-digit dialing in Kentucky (N = 882). FINDINGS: An ordinal regression found that younger age, having a family history of cancer, and greater worry predicted greater intentions to seek genetic testing. A logistic regression found that having more education, excellent subjective knowledge of genetics, and less worry about cancer predicted less need for help in seeking information about testing. An ordinal regression found that less subjective knowledge of genetics and greater worry predicted greater amount of help needed. CONCLUSIONS: Additional counseling to explain limitations of genetic testing may be needed. Further, those with less knowledge about genetics and more worry about hereditary cancer may have greater need for help with information seeking for decision making, a need that may be further exacerbated by the lack of medical professionals, particularly genetic counselors, who may provide information about genetic testing in rural, Appalachian Kentucky.

Predictors of online information seeking by international students when disaster strikes their countries.

This study explores factors influencing international students' likelihood of using the Internet to seek disaster-related information should a disaster affect their countries. A cross-sectional survey was conducted in two universities in America between August 1 and September 30, 2005. Two hundred twenty-nine (n = 229) students completed the self-administered questionnaires. ANOVA analyses found that respondents' Internet self-efficacy had no significant impact on their intentions to seek disaster-related information on the Internet. However, respondents' Internet dependency and attitude toward seeking information online were found to have a significant effect on such intentions.

Use of SNOMED CT to represent clinical research data: a semantic characterization of data items on case report forms in vasculitis research.

OBJECTIVE: To estimate the coverage provided by SNOMED CT for clinical research concepts represented by the items on case report forms (CRFs), as well as the semantic nature of those concepts relevant to post-coordination methods. DESIGN: Convenience samples from CRFs developed by rheumatologists conducting several longitudinal, observational studies of vasculitis were selected. A total of 17 CRFs were used as the basis of analysis for this study, from which a total set of 616 (unique) items were identified. Each unique data item was classified as either a clinical finding or procedure. The items were coded by the presence and nature of SNOMED CT coverage and classified into semantic types by 2 coders. MEASUREMENTS: Basic frequency analysis was conducted to determine levels of coverage provided by SNOMED CT. Estimates of coverage by various semantic characterizations were estimated. RESULTS: Most of the core clinical concepts (88%) from these clinical research data items were covered by SNOMED CT; however, far fewer of the concepts were fully covered (that is, where all aspects of the CRF item could be represented completely without post-coordination; 23%). In addition, a large majority of the concepts (83%) required post-coordination, either to clarify context (e.g., time) or to better capture complex clinical concepts (e.g., disease-related findings). For just over one third of the sampled CRF data items, both types of post-coordination were necessary to fully represent the meaning of the item. CONCLUSION: SNOMED CT appears well-suited for representing a variety of clinical concepts, yet is less suited for representing the full amount of information collected on CRFs.

Utilization and Outcomes of BRCA Genetic Testing and Counseling in a National Commercially Insured Population: The ABOUT Study.

IMPORTANCE: BRCA genetic testing has substantial public health impact, yet little is known of the real-world experiences of the more than 100 000 Americans undergoing testing annually. OBJECTIVE: To identify factors associated with use of BRCA testing, assess whether delivery of genetic counseling and testing services adheres to professional guidelines, and measure the impact on patient-reported outcomes. DESIGN, SETTING, AND PARTICIPANTS: The American BRCA Outcomes and Utilization of Testing (ABOUT) Study analyzed data from a consecutive national series of 11 159 women whose clinicians ordered BRCA testing between December 2011 and December 2012. Aetna mailed recruitment information across the United States to commercial health plan members whose clinicians had ordered BRCA testing. A total of 3874 women (34.7%) completed questionnaires. Deidentified clinician-reported data from all respondents and a random sample of 2613 nonrespondents were also analyzed. MAIN OUTCOMES AND MEASURES: The proportion of eligible participants who met testing criteria and respondents' report of receiving genetic counseling by a genetics clinician and its association with BRCA knowledge, understanding, and satisfaction were assessed. RESULTS: Among 3628 women respondents whose clinicians ordered comprehensive BRCA testing, most were white non-Hispanic (2502 [69.0%]), college educated (2953 [81.4%]), married (2751 [75.8%]), and had higher incomes (2011 [55.4%]). Approximately 16.4% (596) did not meet testing criteria. Mutations were identified in 161 (5.3%) of these women who received comprehensive testing. Only 1334 (36.8%) reported receiving genetic counseling from a genetics clinician prior to testing; the lowest rates (130 [12.3%]) were among patients of obstetrician/gynecologists. The most commonly reported reason for not receiving this clinical service was lack of clinician recommendation. Those who received it demonstrated greater knowledge about BRCA (mean score difference adjusted for demographics and clinician specialty, ß = 0.99 [95% CI, 0.83-1.14]; P < .001) and expressed greater understanding (ß = 0.47 [95% CI, 0.41-0.54]; P < .001) and satisfaction (ß = 2.21 [95% CI, 1.60-2.81]; P < .001). CONCLUSIONS AND RELEVANCE: Despite improved patient knowledge, understanding, and satisfaction among patients who receive genetic counseling provided by a genetics clinician, as well as multiple guidelines emphasizing the importance of genetic counseling, most US women undergoing BRCA genetic testing do not receive this clinical service. Lack of physician recommendation is the most commonly reported reason. These findings demonstrate important gaps in clinical genetics services. Recently mandated coverage of genetic counseling services as a preventive service without patient cost sharing should contribute to improving clinical genetics services and associated outcomes in the future.

Current state of information technology use in a US primary care practice-based research network.

OBJECTIVES: To examine the current levels of information technology (IT) use in a primary care practice-based research network (PBRN) in order to inform future development of its infrastructure. PARTICIPANTS: Every primary care practitioner who is a member of the Kentucky Ambulatory Network (KAN),as well as the office managers of each practice. Practitioners included family practitioners, general practitioners, nurse practitioners and physician assistants. METHODS: A cross-sectional study using two survey instruments: one for office managers and one for practitioners. The office manager survey included questions related to the current state of IT within the practice, plans for enhancement and general IT issues from the perspective of managing a practice. The practitioner survey was designed to measure current IT use and attitudes of primary care practitioners. RESULTS: Response rates for the surveys were 46% (n = 68) for the office managers and 51% (n = 116) for practitioners. All but one practice had internet access; however, 43% had only dial-up service. Only 21% of practitioners use an electronic medical record (EMR), with dollar cost being the barrier reported most frequently (58%). More than half of the office managers were either 'somewhat interested' (45%) or 'very interested' (17%) in a low-cost, standardised EMR that was, at the time, to be sponsored by the American Academy of Family Physicians. For practitioners, 71% were either 'somewhat' or 'very' interested in such a system. Responses to other IT issues are reported. CONCLUSION: While interest in enabling information technologies was high in KAN, adoption was variable, with use of several key technologies reported as low.The results suggest that research in this network that would be dependent on or enhanced by IT might be impeded and, generally, greater attention should be given to enhancing the IT infrastructure in primary care.

An observational study assessing completion time and accuracy of completing the tactical combat casualty care card by combat medic trainees.

INTRODUCTION: Prehospital care documentation is crucial to improving battlefield care outcomes. Developed by United States Army Ranger Special Operations Combat Medics (SOCMs), the Tactical Combat Casualty Care (TCCC) is currently fielded to deployed units to record prehospital injury data. This study documents length of time and accuracy of U.S. Army Combat Medic trainees in completing the minimum preestablished required fields on the TCCC card, establishing a baseline for point-of-injury cards. DESIGN AND METHODS: This was a prospective observational study in which U.S. Army combat medic trainees were timed while recording data on the TCCC card in both the classroom and simulated combat environment. We hypothesized that trainees could complete the TCCC card in less than 1 minute with 90% or greater accuracy. RESULTS: We enrolled 728 U.S. Army Combat Medic trainees in the study during May?June 2011 at Fort Sam Houston, TX. We observed an average TCCC card completion time of less than 1 minute with greater than 90% accuracy in the unstressed classroom environment but an increase to nearly 2 minutes on average and a decrease to 85% accuracy in the simulated combat environment. CONCLUSION: RESULTS imply that the TCCC card is well designed to quickly and accurately record prehospital combat injury information. Further investigation and future studies may compare other prehospital data collection methods with the TCCC card in terms of timely and accurate data collection.

Optimistic bias, information seeking and intention to undergo prostate cancer screening: A Taiwan study on male adults.

BACKGROUND: This study explores optimistic bias and information seeking in prostate cancer patients and how they impact intention to undergo prostate cancer screening. METHODS: A national sample of 427 Taiwanese male adults aged at least 45 years (mean (M) = 57) were recruited to complete a telephone-based survey questionnaire between April 30 and May 8, 2008. RESULTS: The questionnaire results showed that respondents considered themselves less likely than others to get prostate cancer. The relationship between optimistic bias and intention to undergo prostate cancer screening was non-significant, while information seeking positively and significantly predicted such an intention. CONCLUSIONS: The findings of this study imply that health educators should include risk-awareness strategies and information seeking interventions in the design of cancer prevention programs.

SNOMED CT coding variation and grouping for "other findings" in a longitudinal study on urea cycle disorders.

Semantic interoperability requires consistent use of controlled terminologies. However, non-terminology experts (although perhaps experts in a particular domain) are prone to produce variant coding. We examine this problem by investigating SNOMED CT coding variation for other findings reported on case report forms from a clinical research study on urea cycle disorders. The natural language findings from the forms were normalized, and the associated SNOMED CT concept descriptions were compared. The subset of normalized strings associated with two different concept descriptions were further compared to determine the relationship among the associated SNOMED CT concepts. We found 45% of the concept description pairs were associated with two hierarchically related concepts or with the same concept, while 55% were associated with two unrelated concepts. Clearer guidelines for use of SNOMED CT in particular contexts, or structured data entry tools tailored to the needs of non-expert coders, are needed to better manage coding variation.

The effects of communication skills training on pediatricians' and parents' communication during "sick child" visits.

This article reports the development and evaluation of a physician-parent communication skills training program designed to improve communication regarding antibiotic prescribing for children. Four pediatricians and 81 parents participated in the study, which involved audiotaping "sick child" office visits and then coding transcripts for evidence of program influence on information seeking, giving, and verifying, as well as relational communication. Parents who received training were more likely to verify information, t(79) = 1.82, p = .04, and more likely to express concerns, t(79) = 1.79, p = .04, than were parents who did not receive training; there was a nonsignificant trend for trained parents to be more likely to give information, t(79) = 1.7, p = .051. In terms of physician behavior, there were nonsignificant trends for physicians to spend more time creating a partnership with parents after training than before training, t(3) = 2.29, p = .053, and to encourage more questions from parents after training than before, t(3) = 2.15, p = .06. In addition, once one outlier parent in the control condition was removed from the analysis, the results showed that physicians spent more time addressing treatment options after training than before, t(3) = 2.9, p = .03. The results of this study are considered promising, with effects shown for various important elements of physician-parent communication. Implications of results and directions for future research are discussed.

Genomics--the perfect information-seeking research problem.

The intersection of the genetics era and information age poses unique and daunting challenges for health consumers who may not have the health literacy to keep pace. While rapid advances in genetics research promise enhanced care, the inherent complexities and individualistic nature of genetic information have resulted in a challenging information environment. The technical possibilities for acquiring genomic information are increasing at an exponential pace, as are the scientific advances relating to it. Furthermore, societal reactions to genomics, and possible privacy and discrimination issues, may constitute significant constraints. The health care infrastructure also has its limits, given the severe shortage of qualified cancer genetic counselors and general practitioners who are unprepared to address genetics, creating a demand for creative approaches to service delivery. The combination of individual salience, low health literacy, the consumer movement, and important policy problems, then makes genomics the perfect information seeking research problem.

Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts.

QUESTION: How have theorists and empirical researchers treated the human tendency to avoid discomforting information? DATA SOURCES: A historical review (1890-2004) of theory literature in communication and information studies, coupled with searches of recent studies on uptake of genetic testing and on coping strategies of cancer patients, was performed. STUDY SELECTION: The authors' review of the recent literature included searches of the MEDLINE, PsychInfo, and CINAHL databases between 1992 and summer of 2004 and selective, manual searches of earlier literature. Search strategies included the following subject headings and key words: MeSH headings: Genetic Screening/psychology, Decision Making, Neoplasms/diagnosis/genetics/psychology; CINAHL headings: Genetic Screening, Genetic Counseling, Anxiety, Decision Making, Decision Making/Patient; additional key words: avoidance, worry, monitoring, blunting, cancer. The "Related Articles" function in MEDLINE was used to perform additional "citation pearl" searching. MAIN RESULTS: The assumption that individuals actively seek information underlies much of psychological theory and communication practice, as well as most models of the information-seeking process. However, much research has also noted that sometimes people avoid information, if paying attention to it will cause mental discomfort or dissonance. Cancer information in general and genetic screening for cancer in particular are discussed as examples to illustrate this pattern. CONCLUSION: That some patients avoid knowledge of imminent disease makes avoidance behavior an important area for social and psychological research, particularly with regard to genetic testing.

Information-seeking behaviors of practitioners in a primary care practice-based research network (PBRN).

OBJECTIVE: The aim of this study was to examine the information-seeking behaviors (e.g., information resource usage patterns, access to types of sources and to medical libraries, and use of particular information technologies) of members in a primary care practice-based research network (PBRN) to inform future efforts supporting primary care practitioners in their daily care of patients. METHODS: Every primary care practitioner who was a member of the Kentucky Ambulatory Network-including family practitioners, general practitioners, nurse practitioners, and physician assistants-was surveyed. The cross-sectional survey included twenty-six questions to investigate the information-seeking behavior of primary care practitioners. RESULTS: The response rate was 51% (59 of 116). Most practitioners (58%) stated they sought information to support patient care several times per week, and most (68%) noted they do this while the patient waited. Many practitioners (40%) never or almost never perform literature searches from online sources such as MEDLINE, although 44% said they did so a few times per month. A significant correlation between use of online sources and use of print sources suggests that those who seek online information more frequently than those who do not also seek information from print sources frequently, and vice versa. Access to medical libraries was also reported as high. CONCLUSIONS: Consistent with previous studies, the primary care practitioners in this rural PBRN reported more frequent use of print and interpersonal sources compared to online sources. There appeared to be, however, a clear difference between those practitioners who are more likely to seek information, regardless of format, and those who are less inclined. Future interventions will need to address such barriers as time, cost, and information-seeking skills.

An author co-citation analysis of medical informatics.

OBJECTIVE: This study presents the results of an author co-citation analysis of the interdisciplinary field of medical informatics. METHODS: An author co-citation analysis was conducted for the years 1994 to 1998, using the fifty most-cited American College of Medical Informatics fellows as an author population. Co-citation data were calculated for every author pair, and multivariate analyses were performed to ultimately show the relationships among all authors. A multidimensional map was created, wherein each author is represented as a point, and the proximity of these points reflects the relationships of authors as perceived by multiple citers. RESULTS AND CONCLUSION: The results from this analysis provide one perspective of the field of medical informatics and are used to suggest future research directions to address issues related to better understanding of communication and social networks in the field to inform better provision of information services.