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Genetic counseling and testing (GCT) inform cancer management for persons at risk for hereditary breast and ovarian cancer (HBOC). Community‐based organizations (CBOs) may play a role in identifying at‐risk Latinx individuals to connect them to GCT but data are lacking. Two academic centers and their four CBO partners planned to implement a validated questionnaire for HBOC risk screening ("HBOC risk screening tool"). This study aimed to assess CBO's preferences for HBOC risk screening tools, as well as the barriers and facilitators anticipated for future implementation. Pre‐implementation focus groups were conducted with CBO's staff. Discussions centered on current practices to identify and refer at‐risk patients. During the discussion, staff were asked to select one out of five validated HBOC risk screening tools to implement and to discuss anticipated barriers/facilitators for implementation. The four focus groups were coded and qualitative analyzed following the Consolidated Framework for Implementation Research (CFIR) and Health Equity domains. All CBOs chose the Family History Screen 7 (FHS‐7). Participants (N = 35) highlighted how the FHS‐7 was easy to adapt to better fit the target population and changing guidelines. They had positive attitudes toward implementing the screening tool, stressed how the culture of the organization positioned them to reach the target population, and noted barriers in different CFIR domains (e.g., low knowledge about HBOC and GCT referrals; scarce available resources). Participants pointed to barriers related to health equity domains including limited access to GCT and follow‐up care for uninsured and underinsured populations, challenges obtaining accurate family history, and immigration‐related barriers. CBOs highlighted the importance of partnering with other stakeholders to overcome barriers. Findings emphasize the need to develop multi‐level implementation strategies to overcome barriers and leverage facilitators. This study can inform the development of implementation toolkits for CBOs to implement HBOC screening tools to advance health equity. [ABSTRACT FROM AUTHOR]

Objectives: Dysregulation of BCL‐2 family members has been reported in acute lymphocytic leukemia (ALL), with various BH3‐dependencies of the leukemic clone. We conducted a multicenter retrospective cohort of patients with relapsed/refractory B or T ALL, with ven‐chemotherapy or ven‐navitoclax combinations, to assess efficacy and safety. Methods: Seventeen patients were included in the analysis, median age was 32 years, with 6 B‐ALL and 11 T‐ALL patients. Nine patients received venetoclax combined with chemotherapy, and 13 patients received venetoclax in combination with navitoclax, vincristine and asparaginase, of which 5 were already exposed to venetoclax in previous lines. Results: ORR was 55% and 46% among the ven‐chemotherapy and the ven‐navitoclax‐chemotherapy, respectively. Most of the responders proceeded to an allogenic bone marrow transplant in both cohorts. The most common adverse effects of the ven‐navitoclax combination were infectious complications and hepatotoxicity. Conclusions: Our data demonstrated the possible efficacy of ven‐chemotherapy and ven‐navitoclax in r/r ALL with moderate toxicity. [ABSTRACT FROM AUTHOR]

Objective: As germline genetic referral becomes increasingly routine as part of the care of newly diagnosed breast cancer patients, it is important to understand the psychosocial impact of genetic counseling at the time of diagnosis. We examined the psychosocial and quality of life (QOL) impact of providing proactive rapid genetic counseling and testing (RGCT) in the immediate aftermath of a breast cancer diagnosis. Methods: We randomized 330 patients in a 2:1 ratio to proactive rapid genetic counseling (RGCT; N = 222) versus usual care (UC; N = 108). Participants completed a baseline telephone survey before randomization and definitive surgery and a follow‐up survey at 1‐month post‐randomization. We evaluated the impact of RGCT versus UC on breast cancer genetic knowledge, distress, QOL, and decisional conflict. Given that 43% of UC participants and 86% of RGCT participants completed genetic counseling prior to the 1‐month assessment, we also evaluated the impact of genetic counseling participation over and above group assignment. Results: The RGCT intervention led to increased breast cancer genetic knowledge relative to UC but did not differentially impact other study outcomes. Across groups patients who participated in genetic counseling had significantly increased knowledge and improved QOL compared to those who did not participate in genetic counseling. Conclusions: While prior research has documented the impact of genetic counseling and testing on surgical decisions, these results confirm that participation in genetic counseling at the time of diagnosis can yield improvements in knowledge and QOL in the short‐term. [ABSTRACT FROM AUTHOR]

This paper presents a process evaluation of a culturally targeted narrative video about hereditary breast and ovarian cancer (HBOC) for Latina women at risk for HBOC. Spanish‐speaking Latina women at risk for HBOC participated in a single arm study (n = 40). Participants watched the video developed by the authors and responded to surveys. We used mixed methods to assess theoretical constructs that are hypothesized mediators of narrative interventions (i.e., transportation or engagement, identification with characters, emotions) and implementation outcomes (e.g., acceptability). Descriptive statistics summarized theoretical constructs and implementation outcomes. We conducted Mann–Whitney U tests to assess the differences in theoretical and implementation outcomes between participants who were affected versus. unaffected and participants with different levels of education and health literacy. We used the consensual qualitative research framework to analyze qualitative data. Participants' mean age was 47.1 years (SD = 9.48). Most participants were high school graduates or less (62.5%). Acceptability of the video was extremely high (Md = 10.0, IQR = 0.2, scale 1–10). Most (82.5%) suggested video dissemination be through social media. Participants were highly engaged (Md = 5.7, IQR = 1.5, scale 1–7), strongly identified with the main character (Md = 8.7, IQR = 2.6, scale 1–10), and reported experiencing mostly positive emotions (Md = 9.5, IQR = 2.8, scale 1–10). Participants with low health literacy and affected participants reported a significantly higher identification with the main character (p<.05). Qualitative data reinforced the quantitative findings. Women reported gaining knowledge, correcting misconceptions, and feeling empowered. Our culturally targeted video is highly acceptable and targets mechanisms of behavior change for narrative interventions. The video is easily disseminable and can be used as an education tool for patients including affected and unaffected women and patients with different education and health literacy levels. Future studies should test the impact of the video in enhancing genetic counseling and testing uptake. [ABSTRACT FROM AUTHOR]

Objective: To identify clinical predictors of facial nerve (FN) outcomes after microsurgical resection of vestibular schwannoma (VS).Study Design: Prospective cohort study.Setting: Academic medical center.Methods: Consecutive patients undergoing VS resection from November 2017 to October 2019 were included. FN function was evaluated with the House-Brackmann (HB) scale and stratified into good (HB I-II) and poor (HB III-VI) function. Analyses included descriptive statistics, correlation, and logistic regression.Results: Of 256 patients who met criteria (mean age, 47.7 years; 62.5% female), 227 (88.7%) achieved good FN function postoperatively and 238 (93.0%) at latest follow-up (mean, 154.8 days). Operative approaches consisted of translabyrinthine (50.8%), retrosigmoid (25.0%), and middle fossa craniotomies (24.2%). Extent of resection was decided intraoperatively, and gross or near total resection was accomplished in 237 (92.6%) cases. Postoperative HB grade correlated with latest HB grade (0.615, P < .001). Factors associated with good postoperative FN function included small tumor size (≤15 mm; odds ratio [OR], 2.425; P = .042), gross or near total resection (OR, 3.170; P = .041), and ≥100-µV intraoperative FN electromyographic response to a 0.05-mA stimulus (OR, 22.242; P < .001). Factors associated with good FN function at latest follow-up included gross total resection (OR, 7.764; P = .003) and ≥100-µV FN electromyographic response (OR, 8.518; P < .001), accounting for surgical approach and tumor size.Conclusion: Microsurgical resection of VS can be accomplished with excellent FN outcomes. Gross total resection and ≥100-µV intraoperative FN electromyographic response predicted excellent FN outcomes. Immediate postoperative FN function is a prognosticator of long-term FN function. [ABSTRACT FROM AUTHOR]

We report two siblings with intractable epilepsy, developmental regression, and progressive cerebellar atrophy due to biallelic variants in the gene CAD. For the affected girl, uridine started at age 5 resulted in dramatic improvements in seizure control and development, cessation of cerebellar atrophy, and resolution of hematological abnormalities. Her older brother had a more severe course and only modest response to uridine started at 14 years old. Treatment of this progressive condition via uridine supplementation provides an example of precision diagnosis and treatment using clear outcome measures and biomarkers to monitor efficacy. [ABSTRACT FROM AUTHOR]

Objectives: To examine whether simple mobility assessments can predict functional limitations and length of hospitalization after acoustic neuroma (AN) resection.Study Design: Prospective case series.Methods: A prospective clinical study of adult patients undergoing AN resection by either the translabyrinthine, retrosigmoid, or middle fossa approach was conducted at a tertiary center. Preoperative mobility assessments included the functional gait assessment (FGA) and the 10-m walk (10 MW). Postoperatively, the Activity Measure for Post-Acute Care (AMPAC, at 48 hours), FGA, and 10 MW (at 1 week) were obtained. Demographic and medical data were collected.Results: One hundred and thirty-eight patients were analyzed (mean age: 48.3 years, 68.8% female). Mean length of stay (LOS) was 3.1 days. The translabyrinthine approach was most commonly performed (48.6%). On regression analyses, preoperative FGA (P = 0.03) and 48-hour postoperative AM-PAC (P < 0.001) independently predicted LOS, even after accounting for age, gender, body mass index, and tumor size. On receiver operating characteristic analysis, a preoperative FGA cut score of 25.5 predicted a protracted hospital stay (>4 days) with a sensitivity of 77% and specificity of 50% (area under curve: 68.5).Conclusion: This study demonstrated that preoperative mobility assessments can predict functional limitations and LOS after AN resection. These objective tools can be used by clinicians to manage expectations and guide preoperative counseling in patients considering surgery.Level Of Evidence: 3 Laryngoscope, 131:644-648, 2021. [ABSTRACT FROM AUTHOR]

Background: Breast density is an important breast cancer risk factor and a focus of recent national and state health policy efforts. This article describes breast density awareness, knowledge, and communication among participants in a health system-embedded trial with clinically elevated breast cancer risk 1 year before state-mandated density disclosure.Methods: Trial participants' demographics and prior health history were ascertained from electronic health records. The proportions of women reporting prior breast density awareness, knowledge of density's masking effect, and communication with a provider about their own breast density were calculated using baseline interview data collected from 2017 to 2018. Multiple logistic regression was used to estimate associations between women's characteristics and density awareness, knowledge, and communication.Results: Although the overwhelming majority of participants had heard of breast density (91%) and were aware of breast density's masking effect (87%), only 60% had ever discussed their breast density with a provider. Annual mammography screening was associated with prior breast density awareness (odds ratio [OR], 2.97; 95% confidence interval [CI], 1.29-6.81), knowledge (OR, 2.83; 95% CI, 1.20-6.66), and communication (OR, 2.87; 95% CI, 1.34-6.16) compared with an infrequent or unknown screening interval. Receipt of breast biopsy was also associated with prior knowledge (OR, 1.60; 95% CI, 1.04-2.45) and communication (OR, 1.36; 95% CI, 1.00-1.85).Conclusions: Breast density awareness and knowledge are high among insured women participating in clinical research, even in the absence of mandated density disclosure. Patient-provider communication about personal density status is less common, particularly among women with fewer interactions with breast health specialists. [ABSTRACT FROM AUTHOR]

Background: The role of autologous stem cell transplantation (ASCT) in the first complete remission (CR1) of peripheral T-cell lymphomas (PTCLs) is not well defined. This study analyzed the impact of ASCT on the clinical outcomes of patients with newly diagnosed PTCL in CR1.Methods: Patients with newly diagnosed, histologically confirmed, aggressive PTCL were prospectively enrolled into the Comprehensive Oncology Measures for Peripheral T-Cell Lymphoma Treatment (COMPLETE) study, and those in CR1 were included in this analysis.Results: Two hundred thirteen patients with PTCL achieved CR1, and 119 patients with nodal PTCL, defined as anaplastic lymphoma kinase-negative anaplastic large cell lymphoma, angioimmunoblastic T-cell lymphoma (AITL), or PTCL not otherwise specified, were identified. Eighty-three patients did not undergo ASCT, whereas 36 underwent consolidative ASCT in CR1. At the median follow-up of 2.8 years, the median overall survival was not reached for the entire cohort of patients who underwent ASCT, whereas it was 57.6 months for those not receiving ASCT (P = .06). ASCT was associated with superior survival for patients with advanced-stage disease or intermediate-to-high International Prognostic Index scores. ASCT significantly improved overall and progression-free survival for patients with AITL but not for patients with other PTCL subtypes. In a multivariable analysis, ASCT was independently associated with improved survival (hazard ratio, 0.37; 95% confidence interval, 0.15-0.89).Conclusions: This is the first large prospective cohort study directly comparing the survival outcomes of patients with nodal PTCL in CR1 with or without consolidative ASCT. ASCT may provide a benefit in specific clinical scenarios, but the broader applicability of this strategy should be determined in prospective, randomized trials. These results provide a platform for designing future studies of previously untreated PTCL. [ABSTRACT FROM AUTHOR]

Summary: Different models to investigate the prognosis of peripheral T cell lymphoma not otherwise specified (PTCL‐NOS) have been developed by means of retrospective analyses. Here we report on a new model designed on data from the prospective T Cell Project. Twelve covariates collected by the T Cell Project were analysed and a new model (T cell score), based on four covariates (serum albumin, performance status, stage and absolute neutrophil count) that maintained their prognostic value in multiple Cox proportional hazards regression analysis was proposed. Among patients registered in the T Cell Project, 311 PTCL‐NOS were retained for study. At a median follow‐up of 46 months, the median overall survival (OS) and progression‐free survival (PFS) was 20 and 10 months, respectively. Three groups were identified at low risk (LR, 48 patients, 15%, score 0), intermediate risk (IR, 189 patients, 61%, score 1–2), and high risk (HiR, 74 patients, 24%, score 3–4), having a 3‐year OS of 76% [95% confidence interval 61–88], 43% [35–51], and 11% [4–21], respectively (P < 0·001). Comparing the performance of the T cell score on OS to that of each of the previously developed models, it emerged that the new score had the best discriminant power. The new T cell score, based on clinical variables, identifies a group with very unfavourable outcomes. [ABSTRACT FROM AUTHOR]

Objective: Auditory brainstem implants (ABIs), which have previously been used to restore auditory perception to deaf patients with neurofibromatosis type 2 (NF2), are now being utilized in other situations, including treatment of congenitally deaf children with cochlear malformations or cochlear nerve deficiencies. Concurrent with this expansion of indications, the number of centers placing and expressing interest in placing ABIs has proliferated. Because ABI placement involves posterior fossa craniotomy in order to access the site of implantation on the cochlear nucleus complex of the brainstem and is not without significant risk, we aim to highlight issues important in developing and maintaining successful ABI programs that would be in the best interests of patients.Data Sources: Especially with pediatric patients, the ultimate benefits of implantation will be known only after years of growth and development. These benefits have yet to be fully elucidated and continue to be an area of controversy. The limited number of publications in this area were reviewed.Review Methods: Review of the current literature was performed.Results: Disease processes, risk/benefit analyses, degrees of evidence, and U.S. Food and Drug Administration approvals differ among various categories of patients in whom auditory brainstem implantation could be considered for use.Conclusion: We suggest sets of criteria necessary for the development of successful and sustaining ABI programs, including programs for NF2 patients, postlingually deafened adult nonneurofibromatosis type 2 patients, and congenitally deaf pediatric patients. Laryngoscope, 127:1909-1915, 2017. [ABSTRACT FROM AUTHOR]

Background: Long-term survival in patients with aggressive peripheral T-cell lymphoma (PTCL) is generally poor, and there currently is no clear consensus regarding the initial therapy used for these diseases. Herein, the authors analyzed treatment patterns and outcomes in a prospectively collected cohort of patients with a new diagnosis of nodal PTCL in the United States.Methods: Comprehensive Oncology Measures for Peripheral T-cell Lymphoma Treatment (COMPLETE) is a prospective multicenter cohort study designed to identify the most common prevailing treatment patterns used for patients newly diagnosed with PTCL in the United States. Patients with nodal PTCL and completed records regarding baseline characteristics and initial therapy were included in this analysis. All statistical tests were 2-sided.Results: Of a total of 499 patients enrolled, 256 (51.3%) had nodal PTCL and completed treatment records. As initial therapy, patients received doxorubicin-containing regimens (41.8%), regimens containing doxorubicin plus etoposide (20.9%), other etoposide regimens (15.8%), other single-agent or combination regimens (19.2%), and gemcitabine-containing regimens (2.1%). Survival was found to be statistically significantly longer for patients who received doxorubicin (log-rank P = .03). After controlling for disease histology and International Prognostic Index, results demonstrated a trend toward significance in mortality reduction in patients who received doxorubicin compared with those who did not (hazard ratio, 0.71; 95% confidence interval, 0.48-1.05 [P = .09]).Conclusions: To the authors' knowledge, there is no clear standard of care in the treatment of patients with PTCL in the United States. Although efforts to improve frontline treatments are necessary, anthracyclines remain an important component of initial therapy for curative intent. Cancer 2017;123:1174-1183. © 2016 American Cancer Society. [ABSTRACT FROM AUTHOR]

Objective: The study aim was to test the acceptability and preliminary efficacy of a novel interactive web-based breast reconstruction decision support aid (BRAID) for newly diagnosed breast cancer patients considering mastectomy.Methods: Fifty-five women considering mastectomy were randomly assigned to receive the BRAID versus the Cancer Support Community's Frankly Speaking About Cancer: Breast Reconstruction pamphlet. Participants completed measures of breast reconstruction (BR) knowledge, preparation to make a decision, decisional conflict, anxiety, and BR intentions before randomization and 2 weeks later.Results: In terms of acceptability, enrollment into the study was satisfactory, but the rate of return for follow-up surveys was lower among BRAID participants than pamphlet participants. Both interventions were evaluated favorably in terms of their value in facilitating the BR decision, and the majority of participants completing the follow-up reported viewing the materials. In terms of preliminary efficacy, both interventions resulted in significant increases in BR knowledge and completeness and satisfaction with preparation to make a BR decision, and both interventions resulted in a significant reduction in decision conflict. However, there were no differences between interventions.Conclusion: A widely available free pamphlet and a web-based customized decision aid were highly utilized. The pamphlet was as effective in educating women about BR and prepared women equally as well to make the BR decision as compared with a more costly, customized web-based decision support aid. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Pain is a prevailing feature of cervical dystonia ( CD), the most common form of focal dystonia. This analysis examined pain relief after onabotulinumtoxinA treatment in CD subjects with moderate/severe pain from the Cervical Dystonia Patient Registry for Observation of OnabotulinumtoxinA Efficacy ( CD PROBE). Methods CD PROBE was a prospective, multicenter, observational registry of CD subjects who were naïve to botulinum toxin (Bo NT), new to physician, or had not received Bo NT within ≥ 16 weeks if in a clinical trial. Subjects were eligible for 3 treatments, with variable session intervals. Descriptive and inferential statistics were utilized to evaluate the change in pain scores in the population with moderate/severe neck pain at baseline (Pain Numeric Rating Scale [ PNRS] score 4 to 10). Results Of 1046 enrolled, 733 (70.7%) had moderate/severe neck pain at baseline. Postinjection pain questionnaire responses 4 to 6 weeks after each of the 3 treatments revealed that a majority of subjects (67.1%, 72.4%, and 76.4%) reported pain relief; mean time to pain relief was 7.1, 7.4, and 7.6 days. All pain scales showed significant improvements from baseline to final visit (all P < 0.0001): PNRS, mean 6.6 to 3.8; CD Impact Profile-58 Pain and Discomfort subscale, mean 78.7 to 56.5; and Toronto Western Spasmodic Torticollis Rating Scale Pain subscale, mean 12.6 to 8.5. Multivariable regression models showed that initial pain score significantly contributed to the final pain score for all scales. Conclusion Results from this real-world clinical registry indicate that a majority of CD subjects with moderate/severe neck pain experience significant relief following onabotulinumtoxinA treatment. [ABSTRACT FROM AUTHOR]

Telephone genetic counseling (TC) for hereditary breast/ovarian cancer risk has been associated with positive outcomes in high risk women. However, little is known about how patients perceive TC. As part of a randomized trial of TC versus usual care (UC; in-person genetic counseling), we compared high risk women's perceptions of: (1) overall satisfaction with genetic counseling; (2) convenience; (3) attentiveness during the session; (4) counselor effectiveness in providing support; and (5) counselor ability to recognize emotional responses during the session. Among the 554 participants (TC, N = 272; UC, N = 282), delivery mode was not associated with self-reported satisfaction. However, TC participants found counseling significantly more convenient than UC participants (OR = 4.78, 95 % CI = 3.32, 6.89) while also perceiving lower levels of support (OR = 0.56, 95 % CI = 0.40-0.80) and emotional recognition (OR = 0.53, 95 % CI = 0.37-0.76). In exploratory analyses, we found that non-Hispanic white participants reported higher counselor support in UC than in TC (69.4 % vs. 52.8 %; OR = 3.06, 95 % CI = 1.39-6.74), while minority women perceived less support in UC vs. TC (58.3 % vs. 38.7 %; OR = 0.80, 95 % CI = 0.39-1.65). We discuss potential research and practice implications of these findings which may further improve the effectiveness and utilization of TC. [ABSTRACT FROM AUTHOR]

Background Cervical dystonia is thought to result in high disease burden, but limited information exists on its impact on employment and work productivity. We utilized data from the Cervical Dystonia Patient Registry for the Observation of OnabotulinumtoxinA Efficacy (ClinicalTrials.gov identifier: NCT00836017) to assess the impact of cervical dystonia on employment and work productivity and examine the effect of onabotulinumtoxinA treatments on work productivity. Methods Subjects completed a questionnaire on employment status and work productivity at baseline and final visit. Baseline data were examined by severity of cervical dystonia, predominant subtype, presence of pain, prior exposure to botulinum toxin, and/or utility of a sensory trick. Work productivity results at baseline and final visit were compared in subjects who were toxin-naïve at baseline and received three onabotulinumtoxinA treatments. Results Of 1,038 subjects, 42.8% were employed full- or part-time, 6.1% unemployed, 32.7% retired, and 11.8% disabled. Of those currently employed, cervical dystonia affected work status of 26.0%, caused 29.8% to miss work in the past month (mean, 5.1 ± 6.4 days), and 57.8% reported decreased productivity. Half of those unemployed were employed when symptoms began, and 38.5% attributed lost employment to cervical dystonia. Pain, increasing severity, and anterocollis/retrocollis had the largest effects on work status/productivity. Preliminary analyses showed that absenteeism and presenteeism were significantly decreased following onabotulinumtoxinA treatments in the subpopulation that was toxin-naïve at baseline. Conclusions This analysis confirms the substantial negative impact of cervical dystonia on employment, with cervical dystonia-associated pain being a particularly important driver. OnabotulinumtoxinA treatment appears to improve work productivity. [ABSTRACT FROM AUTHOR]

Background: Gene expression profiling (GEP) testing can help to predict the risk of cancer recurrence and guide decisions about adjuvant chemotherapy for breast cancer (BC). However, no prior US studies have evaluated the relation between GEP testing and the use of adjuvant chemotherapy by women treated in a general oncology practice.Methods: Eligible patients were women under the age 65 of years who were newly diagnosed with their first stage I or II, hormone receptor-positive BC between 2006 and 2011 (n = 9405). This retrospective study was conducted with a data set consisting of registry data, health claims data, and GEP testing results. The distribution of GEP test results was reported in terms of the risk of recurrence predicted, and logistic regression was used to assess the association of test results with chemotherapy use, with adjustments made for multiple patient characteristics.Results: The proportions of tested women with low, intermediate, and high recurrence score results were 51%, 39%, and 10%, respectively. Among these women, 11%, 47%, and 88%, respectively, received adjuvant chemotherapy. There was a significant, positive linear relation of assay scores with chemotherapy use within the low and intermediate subgroups after adjustments for all other factors (adjusted odds ratios, 1.17 and 1.20, respectively).Conclusions: Adjuvant chemotherapy use after GEP testing is generally consistent with the recommended test interpretation for women with a high or low predicted risk of recurrence. Chemotherapy use in the intermediate-risk group increased with Recurrence Score values, and evidence from ongoing randomized trials may help to clarify whether this finding reflects optimal interpretation of GEP test results. These results demonstrate the principle that genomic testing, on the basis of research establishing its utility, can be applied appropriately in general practice in accordance with guideline recommendations. [ABSTRACT FROM AUTHOR]

Objective: Relatives of colorectal cancer (CRC) patients are at increased risk for the disease, yet screening rates still remain low. Guided by the Extended Parallel Process Model, we examined the impact of a personalized, remote risk communication intervention on behavioral intention and colonoscopy uptake in relatives of CRC patients, assessing the original additive model and an alternative model in which each theoretical construct contributes uniquely.Methods: We collected intention-to-screen and medical record-verified colonoscopy information on 218 individuals who received the personalized intervention.Results: Structural equation modeling showed poor main model fit (root mean square error of approximation (RMSEA) = 0.109; standardized root mean residual (SRMR) = 0.134; comparative fit index (CFI) = 0.797; Akaike information criterion (AIC) = 11,601; Bayesian information criterion (BIC) = 11,884). However, the alternative model (RMSEA = 0.070; SRMR = 0.105; CFI = 0.918; AIC = 11,186; BIC = 11,498) showed good fit. Cancer susceptibility (B = 0.319, p < 0.001) and colonoscopy self-efficacy (B = 0.364, p < 0.001) perceptions predicted intention to screen, which was significantly associated with colonoscopy uptake (B = 0.539, p < 0.001).Conclusions: Our findings provide support of the utility of Extended Parallel Process Model for designing effective interventions to motivate CRC screening in persons at increased risk when individual elements of the model are considered. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Patients with Wiskott-Aldrich syndrome (WAS) exhibit prominent defects in splenic marginal zone (MZ), resulting in abnormal T-cell-independent antibody responses and increased bacterial infections. B-cell-intrinsic deletion of the affected gene WAS protein (WASp) markedly reduces splenic MZ B cells, without impacting the rate of MZ B-cell development, suggesting that abnormal B-cell retention within the MZ accounts for MZ defects in WAS. Since WASp regulates integrin-dependent actin cytoskeletal rearrangement, we previously hypothesized that defective B-cell integrin function promotes MZ depletion. In contrast, we now report that B-cell-intrinsic deletion of the TLR signaling adaptor MyD88 is sufficient to restore the MZ in WAS. We further identify TLR7, an endosomal single-stranded RNA (ssRNA) receptor, as the MyD88-dependent receptor responsible for WAS MZ depletion. These findings implicate spontaneous activation of MZ B cells by ssRNA-containing self-ligands (likely derived from circulating apoptotic material) as the mechanism underlying MZ depletion in WAS. Together, these data suggest a previously unappreciated role for B-cell intrinsic TLR signals in MZ homeostasis, of relevance to both pathogen responses and to the development of systemic autoimmunity. [ABSTRACT FROM AUTHOR]

ABSTRACT This article examines the evolution of Mind, Brain, and Education ( MBE), the field, alongside that of the International Mind, Brain and Education Society ( IMBES). The reflections stem mostly from my observations while serving as vice president, president-elect, and president of IMBES during the past 10 years. The article highlights the evolution during that time about the meaning of MBE and some of the representations that help illustrate the problems and challenges in arriving at a consensus about what MBE means and how IMBES can best serve its members. I explore how IMBES, incorporated in 2004, experimented with a number of different conference models to provide frameworks for thinking about MBE, as well as a structure for supporting collaboration between the disciplines represented in Mind, Brain, and Education. Those models help highlight what IMBES has accomplished in scaffolding the complex conversation unfolding in the field, as well as offering a strategy for a collaborative enterprise that informs practice and new research agendas in the future. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective Genetic testing for breast and ovarian cancer susceptibility is now part of routine clinical practice. Although rates of risk-reducing surgery following genetic testing have been increasing, little is known about attitudes toward risk-reducing surgery in women prior to genetic counseling and testing. This study examines correlates of patient intentions to undergo risk-reducing mastectomy (RRM) and risk-reducing oophorectomy (RRO). Methods Participants were 696 women, ages 21-85, who sought breast cancer gene 1 and 2 (BRCA1/2) genetic counseling and had at least a 10% risk of carrying a mutation. The sample included women who were affected with breast or ovarian cancer and unaffected women with a known familial BRCA1/2 mutation. Participants completed a precounseling telephone questionnaire. Results Prior to receiving genetic counseling, 23.3% of participants were considering RRM and 42.5% were considering RRO. Variables that were independently associated with RRM intentions were cancer-specific distress (OR = 1.14, 95% CI = 1.03-1.26), perceived risk of breast cancer (OR = 1.16, 95% CI = 1.05-1.28), education (OR = 1.76, 95% CI = 1.03-2.99), and age (OR = 0.96, 95% CI = 0.95-0.98). Predictors of RRO intentions were perceived risk for ovarian cancer (OR = 1.25, 95% CI = 1.14-1.37), perceived risk of carrying a BRCA1/2 mutation (OR = 1.74, 95% CI = 1.15-2.62), marital status (OR = 1.92, 95% CI = 1.34-2.76), and age (OR = 1.02, 95% CI = 1.00-1.03). Conclusions Because precounseling intentions predict subsequent risk-reducing surgery decisions, this study identified patient factors associated with surgical intentions. These factors reinforce the critical role for pretest genetic counseling in communicating accurate risk estimates and management options, and addressing psychosocial concerns, to facilitate informed decision making regarding RRM and RRO. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective The development and increased use of genomic profiling has led to refinement of breast cancer treatment. This study sought to examine medical and surgical oncologists' perceptions of factors related to the translation and integration of Onco type DX® (Genomic Health, Inc., Redwood City, CA, USA) into routine clinical care. Methods Twenty oncologists (10 medical and 10 surgical oncologists) participated in qualitative interviews. Questions centered on the following themes: oncologists' perceptions about the clinical utility of testing, the impact of patient preferences on the decision to test and use results to inform treatment decisions, methods of communicating risk associated with test results to patients, and benefits of and barriers to incorporating testing into multidisciplinary care settings. Results Oncologists found Onco type DX test results useful in their practice but had concerns as well. These included that some oncologists either used testing inappropriately or placed undue emphasis on the results at the expense of other clinical information. The use of intermediate test results, which have less clear clinical implications, incorporating results with patient treatment preferences, and the use of testing in multidisciplinary teams were noted as specific challenges. Conclusion Oncologists noted several benefits of testing and also many challenges, despite wide dissemination and common use. Education for health providers should include specific training in how to interpret and communicate the uncertainty inherent in genomic tests while integrating patient preferences to inform treatment decision making. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

BACKGROUND: Detailed information about how patients with head and neck carcinoma (HNC) are treated across practice settings does not exist. The authors conducted a prospective, observational study to examine the patterns of care for a series of patients with newly diagnosed HNC in the United States and to test 2 hypotheses: 1) There is no difference in the pattern of care between community and academic settings; and 2) the results of major randomized clinical trials will change the pattern of care in both practice settings within 1 year of publication in peer-reviewed journals. METHODS: Patients aged ≥18 years were enrolled in the Longitudinal Oncology Registry of Head and Neck Carcinoma (LORHAN) after providing written informed consent if they had a confirmed diagnosis of new HNC and were scheduled to receive treatment other than surgery alone. RESULTS: Between 2005 and 2010, 100 centers enrolled 4243 patients, including 2612 patients (62%) from academic investigators and 1631 patients (38%) from community centers. Initial treatments were radiation with concurrent chemotherapy (30%) or cetuximab (9%), adjuvant radiotherapy (21%), induction chemotherapy (16%), and other (24%). Intensity modulated radiation therapy was the dominant radiation technique (84%). Single-agent cisplatin was prescribed in nearly half of patients and more often in academic centers (53% vs 43% of patients; P < .0001). Single-agent cetuximab was the next most common drug used (19%) and was prescribed more frequently in community settings (24% vs 17%; P = .0001). The data rejected the 2 prospective hypotheses. CONCLUSIONS: LORHAN documented differences in patient characteristics and treatments between community and academic settings for a large series of patients in the United States. Cancer 2012. © 2012 American Cancer Society. [ABSTRACT FROM AUTHOR]

BACKGROUND: For BRCA1/BRCA2 gene testing to benefit public health, mutation carriers must initiate appropriate risk management strategies. There has been little research examining the long-term use and prospective predictors of the full range of risk management behaviors among women who have undergone BRCA1/2 testing. We evaluated long-term uptake and predictors of risk-reducing mastectomy (RRM), risk-reducing bilateral salpingo-oophorectomy (RRBSO), chemoprevention, and cancer screening among women at a mean of 5.3 years after testing. METHODS: The study participants comprised 465 women who underwent BRCA1/2 testing. Prior to genetic counseling, we measured family/personal cancer history, sociodemographics, perceived risk, cancer-specific distress, and general distress. We contacted patients at a mean of 5.3 years after testing to measure use of RRM, RRBSO, chemoprevention, and breast and ovarian cancer screening. RESULTS: Among participants with intact breasts and/or ovaries at the time of testing, BRCA1/2 carriers were significantly more likely to obtain RRM (37%) and RRBSO (65%) compared with women who received uninformative (RRM, 6.8%; RRBSO, 13.3%) or negative (RRM, 0%; RRBSO, 1.9%) results. Among carriers, precounseling anxiety was associated with subsequent uptake of RRM. RRO was predicted by age. Carriers were also more likely have used breast cancer chemoprevention and have undergone magnetic resonance imaging screening. CONCLUSION: This prospective evaluation of the uptake and predictors of long-term management outcomes provides a clearer picture of decision making in this population. At a mean of 5.3 years after testing, more than 80% of carriers had obtained RRM, RRBSO, or both, suggesting that BRCA1/2 testing is likely to have a favorable effect on breast and ovarian cancer outcomes. Cancer 2011;. © 2011 American Cancer Society. [ABSTRACT FROM AUTHOR]

Building on J. Dewey's (1907) original work with the laboratory school, the College of Education and Health Professions at the University of Texas-Arlington is expanding the original concept to include partners throughout a school system and the community in order to support and advance learning in multiple learning environments. The goal is to establish a network of schools, administrators, teachers, graduate students, and policymakers; not necessarily everyone, but a critical mass of vested partners working collaboratively in what we call a Research Schools Network (RSN). The Network uses the new field of Mind, Brain and Education (MBE) to develop a theoretical and practical foundation for addressing educational challenges in the community. This article explores how the college has partnered with Arlington Independent School District (AISD), neighboring universities, the business community, and our state representative to develop and define new paradigms that not only promote MBE as an academic field, but also inform and are informed by the community it seeks to serve. [ABSTRACT FROM AUTHOR]

Objective: To design a treatment algorithm based on experience with facial nerve schwannomas (FNS) over a 30-year period. Study Design: Retrospective chart review. Method: Seventy-nine patients with facial nerve schwannomas seen from 1979 through 2009 at a tertiary referral private otologic practice were categorized by treatment modality. Interventions included surgical resection with grafting, bony decompression, observation, or stereotactic radiation. Outcome measures included House-Brackmann facial nerve grade before and after intervention as well as change in facial nerve grade, tumor size, involved segments of nerve, time to intervention. Results: Thirty-seven patients (46.8%) ultimately underwent surgical excision with grafting or primary anastomosis, 21 (26.6%) underwent bony decompression alone, 15 (19.0%) were managed with observation only, and 6 (7.6%) had stereotactic radiation. Through 1995, 85% of cases had surgical resection and none had observation only. Of the 52 patients seen after 1995, 27% had surgical resection and grafting, 33% had bony decompression, 29% were managed with observation alone, and 11% had radiotherapy. Facial nerve grade was maintained or improved over the follow-up period (mean time = 3.9 years) in 78.9% of the decompression group and 100% of the observation and radiation groups compared to 54.8% of the resection group ( P ≤ .012). Conclusions: Surgical treatment, once widely accepted and practiced, has in many cases given way to observation, bony decompression, or stereotactic radiation. A wide armamentarium of options is available to the neurotologist treating facial nerve schwannomas with the ability to preserve facial function for a longer period of time. [ABSTRACT FROM AUTHOR]

The article discusses research on the therapeutic approach used for patients with advanced head and neck squamous cell cancer. The researchers used the database Longitudinal Oncology Registry of Head and Neck Carcinoma to identify patients who were scheduled to receive radiotherapy or drug therapy. Results revealed that although chemotherapy is often used for treating locally advanced head and neck cancer, cisplatin-based concurrent chemoradiation is still the most commonly used regimen for the disease.

We probed the impact of two teaching strategies, guided inquiry and argumentation, on students' conceptual understanding of the conservation of matter. Conservation of matter is a central concept in middle school science curriculum and a prerequisite upon which rests more complex constructs in chemistry. The results indicate that guided inquiry was particularly effective in improving students' conceptual understanding, as evidenced by pre/posttest results and by a skill analysis of in-depth interviews of student dyads. We also discuss how the challenges inherent to educational contexts can undermine the quality and limit the impact of empirical research carried out in many schools. We suggest how these challenges could be met in the emerging infrastructures for change called the Research Schools Network. [ABSTRACT FROM AUTHOR]

This article explores the unique and personal experience of learning within a broader framework of development called skill theory. The framework offers a perspective for recognizing within a diversity of experiences a stable order of increasing complexity in skills that individuals display as they execute or demonstrate changes in their understanding. This order is described in terms of a scale, or ruler, that quantifies across domains the achievement of greater levels of complexity in ability. In particular, we explore the process adults follow as they attempt to understand and apply ideas from science and leadership to allow the reader to witness how individual experiences can map onto a “universal” scale of learning and development. [ABSTRACT FROM AUTHOR]

Background: Chinese-American women have much lower mammography screening rates than the general population. This study examined the collective impact of knowledge, cultural views, and health beliefs on intentions to obtain mammography among Chinese women who had not had a mammogram in the previous year.Methods: Five hundred sixty-six immigrant Chinese women from the Washington, District of Columbia and New York metropolitan areas completed baseline assessments for a longitudinal intervention study. Validated surveys were used to measure variables of interest. The outcomes were 1) past mammography use (ever vs never) and 2) future screening intention.Results: Only 35% of the participants reported intentions to obtain mammograms, with approximately 19% of the never users reporting intentions (vs 44% ever users). Ever users had higher knowledge (odds ratio [OR], 1.13; 95% confidence interval [CI], 1.03-1.25), less Eastern cultural views (OR, 0.78; 95% CI, 0.70-0.87), and perceived fewer barriers (OR, 0.78; 95% CI, 0.70-0.87) than never users, controlling for covariates. Never users were more likely to be recent immigrants, have low income, have limited English ability, and lack regular sources of care than ever users (all P<.001). Multivariate models showed that ever users who were employed received physician recommendations, had less Eastern views, perceived higher susceptibility, and were more likely to have intentions. Among never users, being 40-49 years of age and perceiving fewer barriers led to increased intention.Conclusions: Understanding cultural patterns and health beliefs in Chinese women is critical to changing their screening behaviors. Interventions that address their common beliefs and specific group barriers are optimal for promoting mammography adherence. [ABSTRACT FROM AUTHOR]

Objective: Few data are available regarding the long-term psychological impact of uninformative BRCA1/2 test results. This study examines change in distress from pretesting to 12-months post-disclosure, with medical, family history, and psychological variables, such as pretesting perceived risk of carrying a deleterious mutation prior to testing and primary and secondary appraisals, as predictors. Methods: Two hundred and nine women with uninformative BRCA1/2 test results completed questionnaires at pretesting and 1-, 6-, and 12-month post-disclosure, including measures of anxiety and depression, cancer-specific and genetic testing distress. We used a mixed models approach to predict change in post-disclosure distress. Results: Distress declined from pretesting to 1-month post-disclosure, but remained stable thereafter. Primary appraisals predicted all types of distress at 1-month post-disclosure. Primary and secondary appraisals predicted genetic testing distress at 1-month as well as change over time. Receiving a variant of uncertain clinical significance and entering testing with a high expectation for carrying a deleterious mutation predicted genetic testing distress that persisted through the year after testing. Conclusions: As a whole, women receiving uninformative BRCA1/2 test results are a resilient group. For some women, distress experienced in the month after testing does not dissipate. Variables, such as heightened pretesting perceived risk and cognitive appraisals, predict greater likelihood for sustained distress in this group and could be amenable to intervention. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This study relates the performance of college students in introductory science courses to the amount of content covered in their high school science courses. The sample includes 8310 students in introductory biology, chemistry, or physics courses in 55 randomly chosen U.S. colleges and universities. Students who reported covering at least 1 major topic in depth, for a month or longer, in high school were found to earn higher grades in college science than did students who reported no coverage in depth. Students reporting breadth in their high school course, covering all major topics, did not appear to have any advantage in chemistry or physics and a significant disadvantage in biology. Care was taken to account for significant covariates: socioeconomic variables, English and mathematics proficiency, and rigor of their preparatory high science course. Alternative operationalizations of depth and breadth variables result in very similar findings. We conclude that teachers should use their judgment to reduce coverage in high school science courses and aim for mastery by extending at least 1 topic in depth over an extended period of time. © 2008 Wiley Periodicals, Inc. Sci Ed93:798–826, 2009 [ABSTRACT FROM AUTHOR]

Objective: Rising health disparities are increasingly evident in relation to use of genetic services (including genetic counseling and testing) for breast cancer risk, with women of African descent less likely to use genetic services compared with Whites. Meanwhile, little is known regarding potential within-group acculturation and psychological differences underlying perceived barriers to genetic testing among women of African descent. Methods: Hypothesized contributions of acculturation factors and breast cancer-specific distress to perceived barriers to genetic testing were examined with a statistical analysis of baseline data from 146 women of African descent (56% US born and 44% foreign born) meeting genetic breast cancer risk criteria and participating in a larger longitudinal study that included the opportunity for free genetic counseling and testing. Perceived barriers assessed included: (1) anticipation of negative emotional reactions, (2) stigma, (3) confidentiality concerns, (4) family-related worry, and (5) family-related guilt associated with genetic testing. Results: In multivariate analyses, being foreign born was a significant predictor of anticipated negative emotional reactions about genetic testing (β=0.26; SE=0.11; p=0.01). Breast cancer-specific distress scores (avoidance symptoms) were positively related to anticipated negative emotional reactions (β=0.02; SE=0.005; p=<0.0001), confidentiality concerns (β=0.02; SE=0.01; p=0.02), and family-related guilt (β=0.02; SE=0.01; p=0.0009) associated with genetic testing. Conclusions: Results suggest an influence of acculturation and breast cancer-specific distress on perceived barriers to genetic testing among women of African descent. The potential utility of culturally tailored genetic counseling services taking into account such influences and addressing emotional and psychological concerns of women considering genetic testing for breast cancer should be investigated. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: Shared decision making (SDM) is recommended as one method to assist men in making an informed decision about prostate cancer screening (PCS). SDM preferences for PCS have not been evaluated among African-American (AA) men. Given AA men's increased risk and the uncertainty surrounding screening, it is critical to determine how to assist AA men in making an informed decision. We assessed the extent to which a sample of AA men wished to engage in SDM regarding PCS and the demographic and psychological characteristics associated with SDM preferences. Methods: Participants completed a telephone interview that covered demographic and medical information, SDM preferences, PCS knowledge, decisional conflict, and satisfaction with previous screening decisions. Subjects included 286 AA men aged 40–70, who were members of a Masonic organization. Results: Fifty-seven percent preferred SDM, 36% preferred to make their own decision, and 7% wanted their doctor to decide. A higher level of education and older age were associated with preferring SDM (p<0.05), while men with greater PCS knowledge were more likely to prefer to make the decision independently (p<0.05). Conclusions: Results suggest that physicians need to be prepared to discuss PCS with their patients. Further, more attention may be needed to engage younger, less educated, and less knowledgeable men as they may be less likely to discuss PCS. This understanding of AA men's preferences for PCS decisions helps to clarify the issues that health professionals need to consider when attempting to assist AA men in making a PCS decision. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Context: Successful outcome of complex surgical techniques depend on the surgical team''s level of experience. However, unless benefit is demonstrated in the presence of cost savings, insurance companies are reluctant to approve care from highly experienced hospitals and surgical teams.Objective: To determine the relationship between the number of acoustic neuroma surgeries performed at California hospitals with surgical outcome and hospital stay cost.Design: Acoustic neuroma surgery information was extracted from the California hospital discharge database and was grouped according to the number of surgeries performed at each hospital.Setting: A database review of California hospitals.Patients: Persons (n=1,213) undergoing acoustic neuroma surgery at a California hospital between 1996 and 1998.Main outcome measures: Outcome measures included discharge status (routine vs. not routine), medical procedures indicating surgical complications, total cost of hospitalization, and average cost per hospitalization day. Odds ratios were used to compare the hospital volume groups on likelihood of a routine surgical outcome.Results: The frequency of routine surgical outcome increased as hospital acoustic neuroma surgical volume increased, ranging from 68% among patients in the lowest volume group to 97% in the highest hospital volume group. Patients in the highest hospital volume group were 15 times more likely to have a routine surgical outcome than patients in the lowest hospital volume group. Patients in the second highest volume group were 5 times more likely to have a routine surgical outcome than in the lowest volume group. The two highest volume hospital groups had lower total charges and average charges per day than the two lower volume hospital groups.Conclusions: Acoustic neuroma surgeries at higher volume hospitals had higher frequency of routine discharge, lower frequency of apparent complications, and lower average cost of hospitalization. [Copyright &y& Elsevier]

Describes an interactive decision aid to facilitate risk management decision making among carriers of breast cancer genes. Effectiveness of the decision aid in conjunction with genetic counseling; Three options for managing breast cancer risk; Process of developing the CD-ROM decision aid; Theoretical basis and formative data of the CD-ROM.

The article presents a case study of a 81-year-old manwith Medtronic Adapta L pacemaker implanted for symptomatic bradycardia. Topics discussed include elective epidural steroid injection for symptomatic lumbosacral degenerative arthritis, potential adverse consequences of right ventricular (RV) pacing and pacemaker malfunction due to atrial pacing slower than the programmed lower rate limit.