Are We the Problem? A Call to Action for Addressing Institutional Challenges to Engaging Community Partners in Research.

Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

The role of facility and patient mix factors on recovery of screening and diagnostic mammography volumes following the initial COVID-19 pandemic wave.

INTRODUCTION: The goal of this study was to understand the extent to which mammography facilities were able to recover monthly screening and diagnostic mammography volumes to their prepandemic levels and to determine what facility and patient mix factors were associated with recovery. METHOD: Facilities, located in and adjacent to Cook County, Illinois, were eligible. In all, 58 screening and 30 diagnostic mammogram facilities submitted mammogram volumes by month with a cross-listing of patient ZIP codes by screening volumes. Monthly screening and diagnostic volumes for the 6-month immediate postpandemic period (July-December 2020) and for the subsequent postpandemic period (January-June 2021) were compared with the same months in 2019. ZIP code distributions were used to define patient mix characteristics related to disadvantage. RESULTS: Compared with the prepandemic period, Breast Imaging Centers of Excellence conducted roughly 50 fewer monthly screening mammograms (95% CI: -91, -9) but 50 more diagnostic mammograms (95% CI: 24, 82) on average in the immediate postpandemic period. Facilities serving a predominantly Black population conducted roughly 50 fewer monthly screens (95% CI: -93, -13) without any increase in monthly diagnostics. CONCLUSION: Highly accredited (and typically higher volume) facilities appeared to actively triage diagnostics, whereas lower resource facilities appeared to struggle to recover to prepandemic volumes without triage to diagnostics. The pandemic disproportionally impacted minority populations already affected by differential access to and utilization of high-quality mammography. Potential explanations are discussed. Policies should be strengthened to facilitate triaging of services during times of stress to the healthcare system.

The "Sweet Spot" Revisited: Optimal Recall Rates for Cancer Detection With 2D and 3D Digital Screening Mammography in the Metro Chicago Breast Cancer Registry.

OBJECTIVE. One central question pertaining to mammography quality relates to discerning the optimal recall rate to maximize cancer detection while minimizing unnecessary downstream diagnostic imaging and breast biopsies. We examined the trade-offs for higher recall rates in terms of biopsy recommendations and cancer detection in a single large health care organization. MATERIALS AND METHODS. We included 2D analog, 2D digital, and 3D digital (tomosynthesis) screening mammography examinations among women 40-79 years old performed between January 1, 2005, and December 31, 2017, with cancer follow-up through 2018. There were 36, 67, and 38 radiologists who read at least 1000 2D analog examinations, 2D digital examinations, and 3D tomosynthesis examinations, respectively, who were included in these analyses. Using logistic regression with marginal standardization, we estimated radiologist-specific mean recall (abnormal interpretations/1000 mammograms), biopsy recommendation, cancer detection (screening-detected in situ and invasive cancers/1000 mammograms), and minimally invasive cancer detection rates while adjusting for differences in patient characteristics. RESULTS. Among 1,060,655 screening mammograms, the mean recall rate was 10.7%, the cancer detection rate was 4.0/1000 mammograms, and the biopsy recommendation rate was 1.60%. Recall rates between 7% and 9% appeared to maximize cancer detection while minimizing unnecessary biopsies. CONCLUSION. The results of this investigation are in contrast to those of a recent study suggesting appropriateness of higher recall rates. The "sweet spot" for optimal cancer detection appears to be in the recall rate range of 7-9% for both 2D digital mammography and 3D tomosynthesis. Too many women are being called back for diagnostic imaging, and new benchmarks could be set to reduce this burden.

Trends in Attaining Mammography Quality Benchmarks With Repeated Participation in a Quality Measurement Program: Going Beyond the Mammography Quality Standards Act to Address Breast Cancer Disparities.

PURPOSE: The Mammography Quality Standards Act requires that mammography facilities conduct audits, but there are no specifications on the metrics to be measured. In a previous mammography quality improvement project, the authors examined whether breast cancer screening facilities could collect the data necessary to show that they met certain quality benchmarks. Here the authors present trends from the first 5 years of data collection to examine whether continued participation in this quality improvement program was associated with an increase in the number of benchmarks met for breast cancer screening. METHODS: Participating facilities across the state of Illinois (n = 114) with at least two time points of data collected (2006, 2009, 2010, 2011, and/or 2013) were included. Facilities provided aggregate data on screening mammographic examinations and corresponding diagnostic follow-up information, which was used to estimate 13 measures and corresponding benchmarks for patient tracking, callback, cancer detection, loss to follow-up, and timeliness of care. RESULTS: The number of facilities able to show that they met specific benchmarks increased with length of participation for many but not all measures. Trends toward meeting more benchmarks were apparent for cancer detection, timely imaging, not lost at biopsy, known minimal status (P < .01 for all), and proportion of screening-detected cancers that were minimal and early stage (P < .001 for both). CONCLUSIONS: Participation in the quality improvement program seemed to lead to improvements in patient tracking, callback and detection, and timeliness benchmarks.

Disparity in breast cancer mortality by age and geography in 10 racially diverse US cities.

OBJECTIVES: Assess geographic variation in breast cancer racial mortality disparity by age cohorts in US and ten cities with large African American populations. METHODS: Non-Hispanic Black (NHB) and Non-Hispanic White (NHW) female breast cancer mortality rates and NHB:NHW rate ratio (RR) (disparity) were calculated by four age group categories: <40, 40-49, 50-64 and 65+ with time period 1999-2013. RESULTS: In all 10 cities and the US, the most pronounced breast cancer disparities, measured by RR, were seen among younger women. In age group <40, the RR ranges from 1.71 in Houston to 5.37 in Washington, DC. For age group 50-64, the disparity was less pronounced, ranging from 1.24 in New York to 1.72 in Chicago. For 65+ age group, there was wide city to city variation in breast cancer mortality disparity. Three cities had higher mortality for NHW compared to NHB; Baltimore 0.78, Washington DC 0.94 and New York 0.98. One city had no statistically significant racial variation in breast cancer mortality in this age group and six cities had increased NHB: NHW mortality disparities. CONCLUSIONS: While the mortality rate for breast cancer is lower among younger women, the NHB:NHW disparities, as measured by rate ratios, are most pronounced in these age groups. Given the absence of available data regarding incidence, stage and subtypes, further research is necessary and such research is important, given the possible policy implications of these results with respect to screening guidelines and coverage for mammography and breast cancer treatment in particular for younger NHB women.

Changes in the racial disparity in breast cancer mortality in the ten US cities with the largest African American populations from 1999 to 2013: The reduction in breast cancer mortality disparity in Chicago.

PURPOSE: Assess progress made to reduce racial disparity in breast cancer mortality in Chicago compared to nine other cities with largest African American populations and the US. METHODS: The Non-Hispanic Black (NHB) and Non-Hispanic White (NHW) female breast cancer mortality rates and rate ratios (RR) (disparity) were compared between 1999 and 2005 and 2006 and 2013. RESULTS: Between the two periods, the NHB breast cancer mortality rate in Chicago decreased by 13.9% (95% CI [-13.81, -13.92] compared to 7.7% (95% CI [-7.52, -7.83]) for NHW. A drop of 20% in the disparity was observed, from 51% (RR: 1.51, 95% CI [-7.52, -7.83]) to 41% (RR: 1.41, 95% CI [1.30, 1.52]). Whereas from 1999 to 2005 Chicago's disparity was above that of the U.S., from 2006 to 2013, it is now slightly lower. For the remaining nine cities and the US, the mortality disparity either grew or remained the same. CONCLUSIONS: Chicago's improvement in NHB breast cancer mortality and disparity reduction occurred in the context of city-wide comprehensive public health initiatives and shows promise as a model for other cities with high health outcome disparities.

Racial and Ethnic Disparity in Symptomatic Breast Cancer Awareness despite a Recent Screen: The Role of Tumor Biology and Mammography Facility Characteristics.

BACKGROUND: In a racially and ethnically diverse sample of recently diagnosed urban patients with breast cancer, we examined associations of patient, tumor biology, and mammography facility characteristics on the probability of symptomatic discovery of their breast cancer despite a recent prior screening mammogram. METHODS: In the Breast Cancer Care in Chicago study, self-reports at interview were used to define patients as having a screen-detected breast cancer or having symptomatic awareness despite a recent screening mammogram (SADRS), in the past 1 or 2 years. Patients with symptomatic breast cancer who did not report a recent prior screen were excluded from these analyses. Characteristics associated with more aggressive disease [estrogen receptor (ER)- and progesterone receptor (PR)-negative status and higher tumor grade] were abstracted from medical records. Mammogram facility characteristics that might indicate aspects of screening quality were defined and controlled for in some analyses. RESULTS: SADRS was more common among non-Hispanic black and Hispanic than among non-Hispanic white patients (36% and 42% vs. 25%, respectively, P = 0.0004). SADRS was associated with ER/PR-negative and higher-grade disease. Patients screened at sites that relied on dedicated radiologists and sites that were breast imaging centers of excellence were less likely to report SADRS. Tumor and facility factors together accounted for two thirds of the disparity in SADRS (proportion mediated = 70%, P = 0.02). CONCLUSION: Facility resources and tumor aggressiveness explain much of the racial/ethnic disparity in symptomatic breast cancer among recently screened patients. IMPACT: A more equitable distribution of high-quality screening would ameliorate but not eliminate this disparity.

Facilitators and barriers to the successful implementation of a protocol to detect child abuse based on parental characteristics.

To determine the critical facilitating and impeding factors underlying successful implementation of a method to detect child abuse based on parental rather than child characteristics known as the Hague Protocol. The original implementation region of the protocol (The Hague) was compared to a new implementation region (Friesland), using analysis of referrals, focus group interviews (n=6) at the Emergency departments (ED) and at the Reporting Centers for Child abuse and Neglect (RCCAN) as well as questionnaires (n=76) at the EDs. Implementation of the Hague Protocol substantially increased the number of referrals to the RCCAN in both regions. In Friesland, the new implementation region, the number of referrals increased from 2 out of 92,464 patients (three per 100,000) to 108 out of 167,037 patients (62 per 100,000). However in Friesland, child abuse was confirmed in a substantially lower percentage of cases relative to the initial implementation region (62% vs. 91%, respectively). Follow-up analyses suggest that this lower positive predictive value may be due to the lack of training for RCCAN professionals concerning the Hague Protocol. The focus group interviews and questionnaires point to time limitations as the main impediment for implementation, whereas an implementation coach has been mentioned as the most important facilitating factor for success. The Hague Protocol can be used to detect child abuse beyond the initial implementation region. However, training is essential in order to assure a consistent evaluation by the RCCAN.

Beyond the mammography quality standards act: measuring the quality of breast cancer screening programs.

OBJECTIVE: A high-quality screening mammography program should find breast cancer when it exists and when the lesion is small and ensure that suspicious findings receive prompt follow-up. The Mammography Quality Standards Act (MQSA) guidelines related to tracking outcomes are insufficient for assessing quality of care. We used data from a quality improvement project to determine whether screening mammography facilities could show that they met certain quality benchmarks beyond those required by MQSA. MATERIALS AND METHODS: Participating facilities provided aggregate data on screening mammography examinations performed in calendar year 2009 and corresponding diagnostic follow-up, including patients lost to follow-up, timing of diagnostic imaging and biopsy, cancer detection rates, and the proportion of cases of cancer detected as minimal and early-stage tumors. RESULTS: Among the 52 participating institutions, the percentage of institutions meeting each benchmark varied from 27% to 83%. Facilities with American College of Surgeons or National Consortium of Breast Centers designation were more likely to meet benchmarks pertaining to cancer detection and early detection, and disproportionate share facilities were less likely to meet benchmarks pertaining to timeliness of care. CONCLUSION: The results suggest a combination of quality of care issues and incomplete tracking of patients. To accurately measure the quality of the breast cancer screening process, it is critical that there be complete tracking of patients with abnormal screening mammography findings so that results can be interpreted solely in terms of quality of care. The MQSA guidelines for tracking outcomes and measuring quality indicators should be strengthened for better assessment of quality of care.

A new protocol for screening adults presenting with their own medical problems at the Emergency Department to identify children at high risk for maltreatment.

Identifying child abuse and neglect solely on the grounds of child characteristics leaves many children undetected. We developed a new approach (Hague protocol) based on characteristics of parents who attend the Emergency Department (ED) because they have the following problems: (1) intimate partner violence, (2) substance abuse, or (3) suicide attempt or other serious psychiatric problems. The goal of this protocol is to enable the Reporting Center for Child Abuse and Neglect (RCCAN) to rapidly assess family problems and offer voluntary community based support to these parents. The aim of this study is to assess whether this protocol for screening adults presenting for care in the Emergency Department can identify children at high risk for maltreatment. A before and after study was conducted at 9 EDs in 3 regions in the Netherlands (one intervention region and 2 control regions). During the period January 2006 to November 2007, prior to the introduction of the Hague protocol, from a total of 385,626 patients attending the ED in the intervention region 4 parents (1 per 100,000) were referred to the RCCAN. In the period after introduction of the protocol (December 2007 to December 2011), the number rose to 565 parents from a total of 885,301 patients attending the ED (64 per 100,000). In the control region, where the protocol was not implemented, these figures were 2 per 163,628 (1 per 100,000) and 10 per 371,616 (3 per 100,000) respectively (OR=28.0 (95 CI 4.6-170.7)). At assessment, child abuse was confirmed in 91% of referred cases. The protocol has a high positive predictive value of 91% and can substantially increase the detection rate of child abuse in an ED setting. Parental characteristics are strong predictors of child abuse. Implementing guidelines to detect child abuse based on parental characteristics of parents attending the adult section of the ED can increase the detection rate of child abuse and neglect allowing appropriate aid to be initiated for these families.

Screening for refractive errors in children: the plusoptiX S08 and the Retinomax K-plus2 performed by a lay screener compared to cycloplegic retinoscopy.

PURPOSE: To evaluate the performance of the autorefractor Retinomax K-plus2 and the photoscreener plusoptiX S08 in measuring refractive errors by comparing them with cycloplegic retinoscopy (CR) and to assess limitations associated with their use. METHODS: Cross-sectional study to compare data from CR, performed by an orthoptist, to data from Retinomax K-plus2 and plusoptiX S08 performed by a lay screener. Sensitivity and specificity for the detection of significant refractive errors were determined according to American Academy of Pediatric Ophthalmology and Strabismus criteria. RESULTS: Two hundred children were included, with a mean age of 5.2 ± 2.6 years (3 months to 11 years). Compared to CR, the plusoptiX S08 showed a mean difference of -1.13 ± 1.25 D (95% limits of agreement [LOA], -3.59 to +1.32) for spherical equivalent (SE) and -0.23 ± 0.53 D (LOA, -1.28 to +0.81) for the cylinder. Mean difference for the Retinomax K-plus2 before cycloplegia was -0.08 ± 0.58 D (LOA, -1.23 to +1.06) for SE and 0.03 ± 0.38 D (LOA, -0.72 to +0.78) for the cylinder; after cycloplegia -2.11 ± 1.64 D (LOA, -5.33 to +1.10) for SE and -0.06 ± 0.47 D (LOA, -0.98 to +0.86) for the cylinder. Sensitivity for detecting hyperopia >3.5 D with the plusoptiX S08 was 33.3%, the Retinomax before cycloplegia 31.0% and after cycloplegia 84.6% and high for detecting myopia, astigmatism, and anisometropia. CONCLUSIONS: Retinomax K-plus2 and plusoptiX S08 have high sensitivity for the detection of myopia, astigmatism, and anisometropia compared to cycloplegic retinoscopy; however, when used without cycloplegia, hyperopia is underestimated.

Serious complications of pulmonary biopsy in a boy with chylopericardium and suspected pulmonary lymphangiomatosis.

Lymphangiomatosis is a rare disorder. It is commonly localised in the skeletal system and called Gorham's disease, and in thoracic or abdominal organs. Involvement of the pericardium is rare and has been described in less than 20 patients worldwide. The case of a 14-year-old boy presenting with asymptomatic chylopericardium and interstitial lung disease is presented. After lung biopsy, performed to confirm the diagnosis of pulmonary lymphangiomatosis, he developed chylothorax and massive loss of chyle via chest drains. Thoracic duct ligation did not result in clinical improvement. Treatment with interferon α2b was given and because of clinical deterioration radiotherapy was added to the treatment. This resulted in a rapid decrease of chyle production in the patient.

Craniosynostosis in patients with Noonan syndrome caused by germline KRAS mutations.

Craniosynostosis, the premature fusion of one or more cranial sutures, is a developmental defect that disrupts the cranial morphogenetic program, leading to variable dysmorphic craniofacial features and associated functional abnormalities. Craniosynostosis is frequently observed as an associated feature in a number of clinically and genetically heterogeneous syndromic conditions, including a group of disorders caused by activating mutations in genes coding for the fibroblast growth factor receptor family members FGFR1, FGFR2, and FGFR3. In these disorders, dysregulation of intracellular signaling promoted by the aberrant FGFR function is mediated, at least in part, by the RAS-MAPK transduction pathway. Mutations in KRAS, HRAS, and other genes coding for proteins participating in this signaling cascade have recently been identified as underlying Noonan syndrome (NS) and related disorders. While cardinal features of these syndromes include distinctive dysmorphic facial features, reduced growth, congenital heart defects, and variable ectodermal anomalies and cognitive impairment, craniosynostosis is not a recognized feature. Here, we report on the occurrence of premature closure of cranial sutures in subjects with NS, and their specific association with mutations in the KRAS gene. These findings highlight the pathogenetic significance of aberrant signaling mediated by the RAS signaling pathway in other known forms of craniosynostosis, and suggest that, even in the absence of radiologically demonstrable synostosis of the calvarian sutures, dysregulated growth and/or suture closure at specific craniofacial sites might contribute to the craniofacial anomalies occurring in NS.