bluuebunny/crossref_metadata_2025 huggingface dataset:
Are providers prepared for genomic medicine: interpretation of Direct-to-Consumer genetic testing (DTC-GT) results and genetic self-efficacy by medical professionals
Authors: McGrath Scott P. , Walton Nephi , Williams Marc S. , Kim Katherine K. , Bastola Kiran
Published: November 2019

Background

Precision medicine is set to deliver a rich new data set of genomic information. However, the number of certified specialists in the United States is small, with only 4244 genetic counselors and 1302 clinical geneticists. We conducted a national survey of 264 medical professionals to evaluate how they interpret genetic test results, determine their confidence and self-efficacy of interpreting genetic test results with patients, and capture their opinions and experiences with direct-to-consumer genetic tests (DTC-GT).

Methods

Participants were grouped into two categories, genetic specialists (genetic counselors and clinical geneticists) and medical providers (primary care, internists, physicians assistants, advanced nurse practitioners, etc.). The survey (full instrument can be found in the Additional file 1) presented three genetic test report scenarios for interpretation: a genetic risk for diabetes, genomic sequencing for symptoms report implicating a potential HMN7B: distal hereditary motor neuropathy VIIB diagnosis, and a statin-induced myopathy risk. Participants were also asked about their opinions on DTC-GT results and rank their own perceived level of preparedness to review genetic test results with patients.

Results

The rates of correctly interpreting results were relatively high (74.4% for the providers compared to the specialist’s 83.4%) and age, prior genetic test consultation experience, and level of trust assigned to the reports were associated with higher correct interpretation rates. The self-selected efficacy and the level of preparedness to consult on a patient’s genetic results were higher for the specialists than the provider group.

Conclusion

Specialists remain the best group to assist patients with DTC-GT, however, primary care providers may still provide accurate interpretation of test results when specialists are unavailable.
Testing an audit and feedback-based intervention to improve glycemic control after transfer to adult diabetes care: protocol for a quasi-experimental pre-post design with a control group
Authors: Shulman Rayzel , Zenlea Ian , Shah Baiju R. , Clarson Cheril , Harrington Jennifer , Landry Alanna , Punthakee Zubin , Palmert Mark R. , Mukerji Geetha , Austin Peter C. , Parsons Janet , Ivers Noah
Published: November 2019

Background

When young adults transfer from pediatric to adult diabetes care they are at risk for deterioration of glycemic control, putting them at an increased risk of developing both acute and chronic complications. Despite increased awareness of these risks, there are gaps in care delivery during this vulnerable time and variability in the implementation of recommended transition practice. Audit and feedback (AF) interventions have a positive but variable effect on implementation of best practices. An expert group identified specific suggestions for optimizing the effectiveness of AF interventions. We aim to test an AF-based intervention incorporating these specific suggestions to improve transition practices and glycemic control in the first year after transfer from pediatric to adult diabetes care.

Methods

This is a pragmatic quasi-experimental study; a series of three cohort studies (pre-implementation, early-implementation, and post-implementation) to compare the baseline adjusted hemoglobin A1c (HbA1c) in the 12 months after the final pediatric visit in five pediatric diabetes centres within the Ontario Pediatric Diabetes Network in Ontario, Canada. The intervention includes three components: 1) centre-level feedback reports compiling data from chart abstraction, linked provincial administrative datasets, and patient-reported experience measures; 2) webinars for facilitated conversations/coaching about the feedback; and 3) online repository of curated transition resources for providers. The primary outcome will be analyzed using a multivariable linear regression model. We will conduct a qualitative process evaluation to understand intervention fidelity and to provide insight into the mechanisms of action of our results.

Discussion

There is a need to develop an innovative system-level approach to improve outcomes and the quality of care for young adults with type 1 diabetes during the vulnerable time when they transfer to adult care. Our research team, a collaboration of health services, implementation science, and quality improvement researchers, are designing, implementing, and evaluating an AF-based intervention using recommendations about how to optimize effectiveness. This knowledge will be generalizable to other care networks that aim to deliver uniformly high-quality care in diverse care settings.

Trial registration

ClinicalTrials.gov NCT03781973. Registered 13 December 2018. Date of enrolment of the first participant to the trial: June 1, 2019.
Environmental enteric dysfunction: a review of potential mechanisms, consequences and management strategies
Authors: Tickell Kirkby D. , Atlas Hannah E. , Walson Judd L.
Published: November 2019

Background

Environmental enteric dysfunction (EED) is an acquired enteropathy of the small intestine, characterized by enteric inflammation, villus blunting and decreased crypt-to-villus ratio. EED has been associated with poor outcomes, including chronic malnutrition (stunting), wasting and reduced vaccine efficacy among children living in low-resource settings. As a result, EED may be a valuable interventional target for programs aiming to reduce childhood morbidity in low and middle-income countries.

Main text

Several highly plausible mechanisms link the proposed pathophysiology underlying EED to adverse outcomes, but causal attribution of these pathways has proved challenging. We provide an overview of recent studies evaluating the causes and consequences of EED. These include studies of the role of subclinical enteric infection as a primary cause of EED, and efforts to understand how EED-associated systemic inflammation and malabsorption may result in long-term morbidity. Finally, we outline recently completed and upcoming clinical trials that test novel interventions to prevent or treat this highly prevalent condition.

Conclusions

Significant strides have been made in linking environmental exposure to enteric pathogens and toxins with EED, and in understanding the multifactorial mechanisms underlying this complex condition. Further insights may come from several ongoing and upcoming interventional studies trialing a variety of novel management strategies.
Growth faltering is associated with altered brain functional connectivity and cognitive outcomes in urban Bangladeshi children exposed to early adversity
Authors: Xie Wanze , Jensen Sarah K. G. , Wade Mark , Kumar Swapna , Westerlund Alissa , Kakon Shahria H. , Haque Rashidul , Petri William A. , Nelson Charles A.
Published: November 2019

Background

Stunting affects more than 161 million children worldwide and can compromise cognitive development beginning early in childhood. There is a paucity of research using neuroimaging tools in conjunction with sensitive behavioral assays in low-income settings, which has hindered researchers’ ability to explain how stunting impacts brain and behavioral development. We employed high-density EEG to examine associations among children’s physical growth, brain functional connectivity (FC), and cognitive development.

Methods

We recruited participants from an urban impoverished neighborhood in Dhaka, Bangladesh. One infant cohort consisted of 92 infants whose height (length) was measured at 3, 4.5, and 6 months; EEG data were collected at 6 months; and cognitive outcomes were assessed using the Mullen Scales of Early Learning at 27 months. A second, older cohort consisted of 118 children whose height was measured at 24, 30, and 36 months; EEG data were collected at 36 months; and Intelligence Quotient (IQ) scores were assessed at 48 months. Height-for-age (HAZ) z-scores were calculated based on the World Health Organization standard. EEG FC in different frequency bands was calculated in the cortical source space. Linear regression and longitudinal path analysis were conducted to test the associations between variables, as well as the indirect effect of child growth on cognitive outcomes via brain FC.

Results

In the older cohort, we found that HAZ was negatively related to brain FC in the theta and beta frequency bands, which in turn was negatively related to children’s IQ score at 48 months. Longitudinal path analysis showed an indirect effect of HAZ on children’s IQ via brain FC in both the theta and beta bands. There were no associations between HAZ and brain FC or cognitive outcomes in the infant cohort.

Conclusions

The association observed between child growth and brain FC may reflect a broad deleterious effect of malnutrition on children’s brain development. The mediation effect of FC on the relation between child growth and later IQ provides the first evidence suggesting that brain FC may serve as a neural pathway by which biological adversity impacts cognitive development.
Exploring the frontiers of research co-production: the Integrated Knowledge Translation Research Network concept papers
Authors: Graham Ian D. , McCutcheon Chris , Kothari Anita
Published: November 2019

Research co-production is about doing research with those who use it. This approach to research has been receiving increasing attention from research funders, academic institutions, researchers and even the public as a means of optimising the relevance, usefulness, usability and use of research findings, which together, the argument goes, produces greater and more timely impact. The papers in this cross BMC journal collection raise issues about research co-production that, to date, have not been fully considered and suggest areas for future research for advancing the science and practice of research co-production. These papers address some gaps in the literature, make connections between subfields and provide varied perspectives from researchers and knowledge users.
Nonlinear relationship between serum uric acid and body mass index: a cross-sectional study of a general population in coastal China
Authors: Zhou Hui , Liu Zhen , Chao Zhong , Chao Yeqing , Ma Lidan , Cheng Xiaoyu , Wang Yangang , Li Changgui , Chen Ying
Published: November 2019

Background

Conflicting evidence exists on the relationship between body mass index (BMI) and serum uric acid (SUA). Therefore, we aimed to evaluate the SUA–BMI relationship in a large-scale epidemiological survey in coastal China.

Methods

This survey was conducted among the general population in the coastal region of China from September 2014 to January 2015. SUA Levels were measured by the automatic Sysmex Chemix-180 biochemical analyzer.

Results

A total of 6098 men (BMI: 24.58 ± 3.74 kg/m2) and 7941 women (24.56 ± 3.64 kg/m2) were included in this study. A stronger positive BMI-SUA association was found for men than women (all P-values < 0.05). The piecewise linear spline models indicated a U-shaped relationship of SUA-BMI association for both men and women; and the lowest turning points were at 19.12 kg/m2 for men and 21.3 kg/m2 for women. When BMIs were lower than the nadir point, each 1 kg/m2 increase in BMI related to a 7.74-fold (95% CI − 14.73, − 0.75) reduction for men and 2.70-fold reduction (− 4.47, − 0.94) for women in SUA levels. Once the BMI was higher than the nadir point, each 1 kg/m2 increase in BMI was related to a 5.10-fold (4.44, 5.77) increment for men and 3.93-fold increment (3.42, 4.43) for women in SUA levels. The regression coefficient differences between the two stages were 12.84 (5.66, 20.03) for men and 6.63 (4.65, 8.61) for women.

Conclusions

A U-shaped relationship between BMI and SUA was found for both men and women; the association was stronger for men than women.
MIA-Sig: multiplex chromatin interaction analysis by signal processing and statistical algorithms
Authors: Kim Minji , Zheng Meizhen , Tian Simon Zhongyuan , Lee Byoungkoo , Chuang Jeffrey H. , Ruan Yijun
Published: November 2019

The single-molecule multiplex chromatin interaction data are generated by emerging 3D genome mapping technologies such as GAM, SPRITE, and ChIA-Drop. These datasets provide insights into high-dimensional chromatin organization, yet introduce new computational challenges. Thus, we developed MIA-Sig, an algorithmic solution based on signal processing and information theory. We demonstrate its ability to de-noise the multiplex data, assess the statistical significance of chromatin complexes, and identify topological domains and frequent inter-domain contacts. On chromatin immunoprecipitation (ChIP)-enriched data, MIA-Sig can clearly distinguish the protein-associated interactions from the non-specific topological domains. Together, MIA-Sig represents a novel algorithmic framework for multiplex chromatin interaction analysis.
Clinical malaria and the potential risk of anaemia among preschool-aged children: a population-based study of the 2015–2016 Malawi micronutrient survey
Authors: Ntenda Peter Austin Morton , Chilumpha Sosten , Mwenyenkulu Edward Tisungane , Kazambwe Jane Flora , El-Meidany Walaa
Published: November 2019

Background

Anaemia and malaria are common and life-threatening diseases among preschool-aged children in many tropical and subtropical areas, and Malawi is no exception. Accordingly, this study aimed to examine the association of referral clinical malaria with anemia (hemoglobin [Hb] < 110 g/L) in preschool-aged children in Malawi.

Methods

Using cross-sectional data obtained from the 2015–2016 Malawi Micronutrient Survey (MNS), multivariate logistic regression models were constructed using surveylogistic to account for the complex survey design. Blood samples of 1051 children aged 6–59 months were evaluated for malaria (using rapid diagnostic test [RDT] – SD BIOLINE Malaria AgP.f/Pan test histidine-rich protein (HRP-II)™), Hb (using HemoCue 301), α-1-acid glycoprotein (AGP), and serum ferritin biomarkers (using simple sandwich enzyme-linked immunosorbent assay technique, ELISA) and inherited blood disorders from dry blood samples (DBS) using polymerize chain reaction (PCR). Diagnosis of clinical malaria was made on the basis of fever and a positive rapid diagnostic test (RDT).

Results

Of the 1051 PSC analysed, 29% had anaemia while 24.4% had a referral to the hospital due to malaria. After adjustments for known confounders, PSC with a history of referral clinical malaria had increased odds of being anaemic (adjusted odds ratio [aOR] = 4.63, 95% confidence interval [CI]: 2.90–7.40),P <  0.0001.

Conclusions

This study found that clinical malaria increased the risk of anaemia in PSC. Thus, elimination of malaria-causing parasites from the PSC’s blood should be rapid and complete in order to prevent the progression of uncomplicated malaria to a chronic infection that can lead to the development of malaria-related anaemia.
Characterization of plasmid-mediated qnrA and qnrB genes among Enterobacteriaceae strains: quinolone resistance and ESBL production in Ismailia, Egypt
Authors: Taha Samaa A. , Omar Hanan Hassan , Hassan wafaa Hassan
Published: November 2019

Background

Plasmid-mediated quinolone resistance genes (PMQR) are mainly associated with clinical isolates of Enterobacteriaceae and complicate treatment of infections caused by these isolates worldwide. Extended-spectrum-beta-lactamase (ESBL)-producing bacteria are resistant to common antibiotics and also through many mechanisms, ESBL could be disabling other types of antibiotics. This study aimed to assess the prevalence of quinolone resistance and ESBL among Enterobacteriaceae strains and investigated the presence of qnrA and qnrB genes in these strains which were isolated from urinary tract infections in Ismailia, Egypt. Ninety-four Enterobacteriaceae isolates were collected from cases of UTIs admitted to the intensive care unit, Suez-Canal University Hospitals, between October 2017 and January 2018. Antibacterial susceptibility was determined by the disk diffusion method. A polymerase chain reaction assay was used to detect qnrA and qnrB resistance genes in quinolone- and fluoroquinolone-resistant and ESBL strains. Also, ciprofloxacin MIC was determined by the agar dilution method.

Results

Resistance rates were 59.6%, 54.3%, 53.2%, 53.2%, and 53.2% to NA, LEV, NOR, CIP, and FX, respectively. Of 56 NA-resistant isolates, 7 (12.5%) and 6 (10.7%) were positive for qnrA and qnrB, respectively, with only one isolate co-harboring both genes. ESBL-producing bacteria was 66.2% of isolates. The MICs for ciprofloxacin ranged from 32–256 μg/ml in ciprofloxacin-resistant isolates.

Conclusion

Our study shows high resistance rates of Enterobacteriaceae to quinolones and ESBL in our hospital which necessitate appropriate use of these antibiotics to reserve their application for therapy. The prevalence of quinolone-resistant and ESBL-producing Enterobacteriaceae was approximately 60% and 70% respectively.
Depositional impact on the elastic characteristics of the organic shale reservoir and its seismic application: A case study of the Longmaxi-Wufeng Shale in the Fuling gas field, Sichuan Basin
Authors: Zhao Luanxiao , Wang Yang , Liu Xiwu , Zhang Jinqiang , Liu Yuwei , Qin Xuan , Li Kejian , Geng Jianhua
Published: November 2019

Seismic characterization of the depositional evolution history of the organic shale reservoir is essential for reservoir quality evaluation and geologic model building in unconventional plays. However, a direct link between the depositional environment and seismic elastic responses in organic-rich shales remains unclear. By combining the depositional history and rock-physics analysis, we have determined how the depositional environment affects the elastic characteristics of the Longmaxi-Wufeng Shale in the Fuling gas field, Sichuan Basin, Southwestern China. Sedimentological control on the elastic properties mainly lies in two aspects: First, the distinct elastic features of the overlying turbidity mudstone and the underlying deepwater shelf Longmaxi Formation are primarily caused by the rock structure difference due to water energy; second, within the deepwater shelf siliceous shale formation, the elastic property variations are primarily controlled by the progradation tract system and water depths. We evaluate the effect of two types of quartz (biogenic quartz and detrital quartz) in conjunction with organic matter on the elasticity of organic shale. Furthermore, we determine that the two most commonly used seismic inversion attributes, P-impedances and the [Formula: see text] ratio, can be used to indicate the depositional facies evolution. This also gives insights into using geophysical attributes to directly characterize depositional facies for unconventional shale reservoirs.
Hydrocarbon identification using the AVO response correction method based on high-resolution complex spectral decomposition
Authors: Tan Huihuang , Zhou Donghong , Zhang Shengqiang , Zhang Zhijun , Duan Xinyi , Gao Wei
Published: November 2019

Amplitude-variation-with-offset (AVO) technique is one of the primary quantitative hydrocarbon discrimination methods with prestack seismic data. However, the prestack seismic data are usually have low data quality, such as nonflat gathers and nonpreserved amplitude due to absorption, attenuation, and/or many other reasons, which usually lead to a wrong AVO response. The Neogene formations in the Huanghekou area of the Bohai Bay Basin are unconsolidated clastics with a high average porosity, and we find that the attenuation on seismic signal is very strong, which causes an inconsistency of AVO responses between seismic gathers and its corresponding synthetics. Our research results indicate that the synthetic AVO response can match the field seismic gathers in the low-frequency end, but not in the high-frequency components. Thus, we have developed an AVO response correction method based on high-resolution complex spectral decomposition and low-frequency constraint. This method can help to achieve a correct high-resolution AVO response. Its application in Bohai oil fields reveals that it is an efficient way to identify hydrocarbons in rocks, which provides an important technique for support in oil and gas exploration and production in this area.
A randomized trial of medical cannabis (MC) in patients with advanced cancer (AC) to assess impact on opioid use and cancer-related symptoms.
Authors: Zylla Dylan M. , Eklund Justin , Gilmore Grace , Gavenda Alissa , Vazquez-Benitez Gabriela , Pawloski Pamala A. , Arneson Tom , Birnbaum Angela , Dahmer Stephen , Tracy Matthew , Dudek Arkadiusz Z.
Published: November 2019

109

Background: Higher pain and greater long-term opioid requirements have been associated with shorter survival and decreased quality of life (QOL) in patients with AC. Routine use of MC is limited by a lack of rigorous scientific data and concerns about side effects, legal ramifications, and cost. Methods: 30 patients with stage IV cancer requiring opioids were randomized 1:1 to early cannabis (EC, n=15) vs. delayed cannabis (DC, n=15). The EC group was provided with 3 months (3M) of MC at no charge, while the DC group received standard oncology care without MC for the first 3M. Patients met with licensed pharmacists at one of two MC manufacturers to determine optimal MC dosing, formulation, and route. Patients completed monthly pain logs, opioid/MC logs, and validated Patient-Reported Symptom Monitoring surveys. Results: A higher proportion of EC patients achieved a reduction in opioid use and improved pain control. On average over a 3M window, EC patients did not require opioid dose escalation, had lower mean pain, and had similar QOL compared to DC patients. Estimated mean daily THC and CBD dose at 3M was 76 mg (range 5-186 mg) and 36 mg (range <1-516 mg), respectively. Mean perceived benefit of MC was 5.1 and mean perceived negative impact was 2.7 (1 = no benefit/negative effects, 7 = a great deal of benefit/negative effects). 33% of patients died during the anticipated 6-month study period and patient compliance with study logs limited analysis. Conclusions: Randomized studies of MC in the oncology setting are feasible, but rigorous data collection is challenging. The addition of MC to standard oncology care in patients with AC was well-tolerated and may lead to improved pain control and lower opioid requirements. [Table: see text]
Acute care and hydration due to chemotherapy-induced nausea and vomiting (CINV) among patients receiving NEPA prophylaxis for anthracycline + cyclophosphamide (AC).
Authors: Roeland Eric , Navari Rudolph M. , Ruddy Kathryn Jean , LeBlanc Thomas William , Clark-Snow Rebecca Anne , Wickham Rita S. , Binder Gary , Bailey William L. , Schwartzberg Lee S.
Published: November 2019

112

Background: In the US, the CMS OP-35 oncology outcome measure deems 30-day post-chemotherapy acute care involving nausea and emesis (NV) or 8 other toxicities as avoidable, with studies showing 15% of > 2500 patients receiving anthracycline + cyclophosphamide (AC)-based chemotherapy had avoidable acute care, of which 32% involved NV. Our aim was to evaluate resource use (emergency department [ED] visits, inpatient admissions [IP], or hydration) in a prospective trial of women with breast cancer who received combination netupitant/palonosetron (NEPA) + dexamethasone (DEX) for CINV prophylaxis for AC-based chemotherapy. Methods: Women initiating AC received oral or IV NEPA + DEX. Pre-specified endpoints included safety, complete response, acute care (ED/IP), unplanned IV hydrations (as determined by investigator), days of CINV, and ≥3 days of CINV. We defined CINV as emesis or rescue drug use up to 5 days after AC, and defined concomitant ED/IP or hydrations in the same period as CINV-related. We limited our analysis to the first 2 cycles, the median duration in the NEPA study. Results: 402 patients received ≥1 cycle of AC and 391 completed 2 cycles. Nine patients had IP (none CINV-related), and 5 patients had a total of 6 ED visits (1 CINV-related). Three patients had a CINV-related unplanned hydration. Patients had ≥1 day of CINV in 172 of 793 cycles (21.7%); of these, the majority had symptom duration for 1-2 days, while 78 (9.8%) had ≥3 days of CINV in a cycle. Conclusions: In this prospective CINV prophylaxis study in women receiving AC chemotherapy, < 1% of women receiving NEPA + DEX required acute care for CINV and < 1% required unplanned hydrations for CINV. These rates are below previously reported CINV-related acute care rates for AC suggesting NEPA may help avoid CINV-related acute care. Clinical trial information: NCT03403712.
A clinical model to predict one-year mortality for patients with advanced cancer.
Authors: Owusuaa Catherine , Van Der Padt - Pruijsten Annemieke , Nieboer Daan , van der Heide Agnes , Van Der Rijt Carin C. D.
Published: November 2019

132

Background: Advance care planning is necessary for cancer patients who are in their last year of life. We developed a clinical model to predict 1-year mortality for patients with advanced cancer. Methods: Patients with advanced cancer and no curatively aimed treatment options were included in a prospective multicenter observational study involving six hospitals in the Netherlands (June-November 2017). Using cox regression, a model was developed with candidate predictors as identified in literature: surprise question (SQ), clinical characteristics (age, sex, primary tumor, metastases, WHO performance status, food intake, weight loss, pain, comorbidity, dyspnea, and fatigue), and laboratory values (serum albumin, hemoglobin, and C-reactive protein). The primary outcome was all-cause 1-year mortality. Discriminative ability was measured using the c-statistic and assessed using internal-external validation by study hospital. Results: Of 867 patients (median age 66 years, male 47%), 362 (42%) died within 1-year follow-up. Three models were developed: model 1: SQ; model 2: SQ + clinical characteristics; model 3: SQ + clinical characteristics + laboratory values. Predictors included in the most expansive model 3 were: SQ ‘no’ (ref: ‘yes’; HR 3.43, 95% CI 2.57-4.58), age per 10 years (HR 1.07, 95% CI 0.97-1.18), primary tumor-site (ref: prostate, breast, or thyroid; HR 1.35, 95% CI 1.01-1.82), visceral metastases (HR 1.32, 95% CI 1.05-1.65), brain metastases (HR 1.54, 95% CI 1.07-2.22), WHO performance status 1 (ref: 0; HR 1.03, 95% CI 0.76-1.41), WHO performance status 2+ (ref: 0; HR 1.50, 95% CI 1.04-2.15), any weight loss (ref: none; HR 1.09, 95% CI 0.86-1.38), pain score (HR 1.03, 95% CI 0.98-1.09); dyspnea grade 1 (ref: 0; HR 1.20, 95% CI 0.94-1.54), dyspnea grade 2+ (ref: 0; HR 1.33, 95% CI 0.93-1.91), C-reactive protein (HR 1.15, 95% CI 1.04-1.27), and serum albumin (HR 0.97, 95% CI 0.95-1.00). The pooled c-statistic at internal-external validation was 0.69 for model 1, 0.76 for model 2, and 0.78 for model 3. Conclusions: A model that combines the SQ with easily available clinical characteristics (with or without laboratory values) is more accurate in predicting 1-year mortality in patients with advanced cancer than the SQ alone.
Distress screening in cancer survivorship.
Authors: Brockway-Marchello Julia P. , Theroux Haley Hines , Piccolino Sophia Tsesmelis , Yang Qiuchen , Smith Cardinale B.
Published: November 2019

138

Background: Cancer survivors have varied physical, psychosocial, emotional and financial needs that may differ from needs of active cancer treatment patients. Distress screening identifies and monitors the needs of patients and is mandated for certain accreditations. There is a paucity of data on the application of distress screening among survivors. We used a validated distress screening tool to conduct a needs assessment of cancer survivors in solid oncology. Methods: The Cancer Support Source Distress Screening tool is an 18-item survey given on the 2nd and every 3-month clinic visit to assess depression and distress. The first analysis, merged patient data (patients completing ≥ 2) with cancer registry to identify solid cancer survivors from July 2015 to October 2018. A descriptive analysis of these patients was performed. The second analysis was cross-sectional with a larger data set of all solid tumor patients completing a survey at any time pre, during, or post treatment. We compared distress and depression scores using analysis of variance. A bivariate and multivariate analysis evaluating change in depression and distress scores over time is ongoing. Results: In analysis one, 92 patients were identified. Depression scores improved for most cancer types; distress scores improved for all cancers. Emotional, communication, provider relationship, system of care, body image and social support were associated with significant changes in survivorship concern. In the expanded dataset, 908 patients were identified. The distribution of depression and distress scores are shown in the table. There was a significant decrease for depression scores (p<.001) and distress scores (p<.001). Multivariate analysis to evaluate change in depression and distress scores across the survivorship trajectory is ongoing. Conclusions: A distress screening survey may be a useful tool in assessing the unmet needs of cancer survivors. Identifying prevalent domains of survivorship issues can highlight areas of greatest perceived need and can guide quality improvement initiatives within a cancer program. [Table: see text]
Precision lung cancer survivorship care: Accrual to the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program.
Authors: Studts Jamie L ,   The Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program Team
Published: November 2019

144

Background: Recent innovations in lung cancer care create an urgent need to generate survivorship care interventions that target lung cancer survivors and tailor content and services to this unique community. In addition to suffering significant distress and symptom burden, individuals diagnosed with lung cancer suffer the additional burden of stigma and bias and may not receive optimal social support. The Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program adopts a precision survivorship approach by combining shared decision making and motivational interviewing to address specific threats to quality of life experienced by an individual facing lung cancer. Methods: A single-arm trial was conducted at nine cancer care facilities across Kentucky to assess intervention feasibility, acceptability, and preliminary efficacy. Eligible participants included individuals diagnosed with lung cancer who did not evince acute psychiatric or substance abuse issues. Upon consent, participants completed a baseline survey (T1) and medical data was extracted from the electronic record. Participants also completed the survey following intervention completion (T2) and six months post-baseline (T3). Analyses evaluate accrual and completion rates as well as participant demographics. Results: Over an approximately 12-month accrual period, nine sites accrued 142 participants. Three sites exceeded the accrual goal of 20. Of the participants accrued, 138 (97%) completed T1, 84 (58%) completed T2, 74 (52%) completed T3, and 70 (49%) provided complete data. The majority of participants were female (64%), the mean age was 63.4 (9.3) years, and nearly all participants were white/non-Hispanic (96%). Most participants had a high school degree or less (52%), described household incomes of $35K or less, but nearly all reported carrying health insurance (98%). Conclusions: The Kentucky LEADS program offers an intriguing approach to engaging lung cancer survivors by incorporating precision care strategies that may circumvent some of the more common challenges to reaching individuals diagnosed with lung cancer. Clinical trial information: NCT02989974.
Associations of caregiver-oncologist discordance in prognostic understanding with caregiver-reported therapeutic alliance and anxiety.
Authors: Loh Kah Poh , Xu Huiwen , Epstein Ronald M. , Mohile Supriya Gupta , Prigerson Holly Gwen , Plumb Sandy , Ladwig Susan , Wong Melisa L. , Kadambi Sindhuja M , McHugh Colin , An Amy W. , Trevino Kelly Marie , Saeed Fahad , Duberstein Paul
Published: November 2019

15

Background: Discordance in prognostic understanding between caregivers of adults with cancer and the patient’s oncologist is common. However, the relationship between caregiver-oncologist discordance and caregiver bereavement outcomes is unknown. We evaluated the associations of caregiver-oncologist discordance in beliefs about the patient’s curability and life expectancy with caregiver-reported therapeutic alliance and anxiety. Methods: This is a secondary analysis of a multicenter study that assessed the effect of a communication intervention among patients with advanced cancer and their caregivers. Prior to intervention exposure, caregivers and oncologists were asked about their belief in the patient’s chances for cure and living ≥2 years: 100%, about 90%, about 75%, about 50/50, about 25%, about 10%, and 0%. Discordance was defined as a difference by 2 response levels on each prognostic understanding item. Outcomes at 7 months after patient death included caregiver-reported therapeutic alliance [modified 5-item Human Connection (THC) scale] and anxiety (Generalized Anxiety Disorder-7). We used multivariable linear regression models to assess the independent associations of discordance with therapeutic alliance and anxiety. Results: We included 97 caregivers (mean age 63, range 22-83). Approximately 40% of caregiver-oncologist dyads had discordant beliefs about curability (caregivers were more optimistic in 100% of dyads) and 63% had discordant beliefs about life expectancy (caregivers were more optimistic in 94% of dyads). On multivariate analysis, discordance in beliefs about prognostic estimates was associated with lower THC score (b = -6.94, SE 3.17, p = 0.03). Discordance in beliefs about curability was associated with lower anxiety levels (b = -1.79, SE 0.90, p = 0.05). Conclusions: Caregiver-oncologist discordance may decrease caregiver-reported therapeutic alliance and anxiety, both of which may shape how caregivers interact with the healthcare system. A better understanding the role of caregivers’ prognostic understanding will guide interventions to improve caregiver-oncologist therapeutic alliance and caregiver anxiety. Clinical trial information: NCT01485627.
Balanced framing in prognostic discussions among patients with advanced cancer.
Authors: An Amy W. , McHugh Colin , Nicholls Lauren Elizabeth , Epstein Ronald M. , Tejani Mohamedtaki Abdulaziz
Published: November 2019

22

Background: Prognostic awareness, which incorporates understanding of treatment goals, curability, life-expectancy, and anticipated course of illness, is critical to informed decision-making. In this qualitative study, we explored how balanced framing is utilized during prognostic discussions in oncology office visits. Methods: We (2 oncologists, 3 palliative care physicians) performed a secondary analysis of transcripts of audio-recorded visits between oncologists, caregivers, and patients with advanced cancer obtained as part of a large NIH-funded study. Transcripts were from one study site and included a variety of oncologists, cancer sites, and levels of patient prognostic awareness, as defined by concordance with the oncologist. For analysis, we chose transcripts with some discussion relating to prognosis (eg. treatment goals, etc.). We met regularly to identify themes contributing to prognostic awareness. Differences were reconciled via group discussion. This process continued iteratively until saturation was achieved (n = 24). Results: Prognosis content was reviewed during discussion of treatment goals (n = 15), life-expectancy (n = 14), and future planning (n = 18). In 8 examples of balanced framing of treatment options, oncologists acknowledged the uncertain benefit of treatment and considered patient quality of life; in 7 that did not, oncologists presented treatment as default and emphasized positive outcomes. In 8 examples of balanced framing in estimating life-expectancy, oncologists presented patient-specific ranges and acknowledged exceptionally long and short survival possibilities; in 6 that did not, oncologists provided broad ranges or focused on unusually long survival. In 6 examples of balanced framing in future planning, oncologists acknowledged best supportive care as an alternative to treatment; of 12 that did not, only the next line in treatment or clinical trial was discussed. Conclusions: Although prior research suggests that balanced framing is uncommon, we have identified occasions in which it occurs and characterized how it can be accomplished in prognostic discussions. Further study is needed to better understand the effect of balanced framing on patient prognostic awareness.
Prevalence of prognostic uncertainty and impact on prognostic discussions in thoracic oncology.
Authors: Habib Anand , Zhang Zilu , Tanasijevic Anna , Chen Richard , Awad Mark M. , Odejide Oreofe Olukemi , Abel Gregory A.
Published: November 2019

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Background: Recent advances for late-stage lung cancer may have led to a shift from therapeutic ‘nihilism’ to ‘optimism’ (Temel, JCO 2016). It is not known whether this shift has increased prognostic uncertainty nor whether oncologists’ tolerance of uncertainty affects their prognostic discussion practices. Methods: In October 2018, we sent a 34-item survey by FedEx to a random sample of thoracic oncologists (n=444) listed in the publicly-available ASCO directory. The survey assessed professional training, perceptions of prognostic uncertainty for advanced lung cancer, prognostic discussion practices, uncertainty tolerance using an adapted Physicians’ Reactions to Uncertainty (PRU) scale (Gerrity , Motivation and Emotion 1995), and presented a clinical vignette. Results: We received 178 completed surveys from thoracic oncologists in 36 states (response rate: 40.4%). Median duration of practice was 29 years, and 56.7% endorsed an academic affiliation. 52.3% agreed that “there is more prognostic uncertainty in the management of lung cancer now than there was 10 years ago,” and 36.4% noted difficulty “staying up-to-date on the most recent science” in lung cancer management. Surprisingly, only 78.4% reported discussing prognosis with the vast majority (>95%) of their patients. In univariable logistic regression analyses, respondents had lower odds of reporting discussing prognosis with >95% of their patients if they scored highly on the PRU ‘anxious due to uncertainty’ subscale (OR=0.39 [0.18,0.83]), the PRU’s ‘reluctant to disclose uncertainty’ subscale (OR=0.43 [0.20,0.93]) or were male (OR=0.28 [0.08,0.97). Those with higher reluctant to disclose uncertainty scores were also less likely to agree that they would discuss life expectancy when first meeting a patient with stage IV NSCLC presented in the vignette (p=0.014). Conclusions: Data from this geographically diverse cohort of lung cancer oncologists suggest there is increasing prognostic uncertainty within thoracic oncology, and that many find it challenging to stay current with practice changes. Moreover, oncologists’ personal characteristics including gender and uncertainty tolerance may affect their propensity to discuss prognosis.
The effect of coaching-based lay patient navigation on patient satisfaction and overcoming barriers to care.
Authors: Wiatrek Dawn , Erb Nicole , Roberts Shelby
Published: November 2019

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Background: The American Cancer Society is enhancing its lay patient navigator program to include tailored coaching in addition to resource navigation. The goal is to increase the patient’s engagement in overcoming barriers to care. In a pilot of this new model, 6 navigators in 6 different program sites completed a training in coaching, active listening and action planning with patients. Methods: A total of 1,210 patients were navigated through the pilot program over 2 phases. This abstract focuses on phase 2 consisting of 792 patients navigated by 3 navigators at 3 different safety-net hospitals. The navigators met with patients over a 1-year period and engaged in coaching sessions to set action plans to overcome barriers to care. In the first session, navigators developed an action plan with the patient and administered a patient satisfaction survey. Over time, the navigators continued meeting with the patient and documenting progress on the action plan. Navigators administered a second patient satisfaction survey prior to or during the patient's last session. Results: 792 patients had a first coaching session with the navigator and set a combined 2,430 actions to overcome 1,356 barriers. 87% of patients agreed to take the first patient satisfaction survey with 95% reporting that they created a plan with the navigator. Patients reported an average confidence level of 8.6/10 that the plan they set with the navigator would work. Patients also reported a high level of satisfaction with the meeting with an average score of 4.4 on a 5-point scale. 408 patients completed the full coaching program during the project period and 77% of those patients with a final coaching session completed the satisfaction survey. 88% of patients reported completing at least some steps in their action plan and 89% reported solving at least one problem with the navigator that came up during their cancer care. Overall satisfaction with the navigator remained constant at 4.4/5. Conclusions: Patients responded positively to coaching-based lay patient navigation and were able to create action plans with the navigator, achieve those actions, and ultimately overcome non-medical barriers to cancer care.
Randomized trial of a hospice video decision aid for patients with advanced cancer and their caregivers.
Authors: El-Jawahri Areej , Vanbenschoten Olivia , Bhatt Sunil Mahesh , Fenech Alyssa L. , Markovitz Netana , Traeger Lara , Greer Joseph , Volandes Angelo E. , Temel Jennifer S.
Published: November 2019

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Background: Although hospice provides high-quality end-of-life care for patients with advanced cancer, the service remains underutilized in part due to lack of adequate information provided to patients and families about hospice care. Methods: We conducted a single-site randomized clinical trial of a hospice video decision aid versus a verbal description in 150 hospitalized patients with advanced cancer and their caregivers. Patients without an available caregiver were eligible to participate. Intervention participants (75 patients; 18 caregivers) received a verbal description about hospice plus a six-minute video depicting hospice care. Control participants (75 patients; 26 caregivers) received only the verbal description. The primary endpoint was patient preference for hospice care immediately after the intervention, adjusting for baseline preferences. Secondary outcomes included patient and caregiver knowledge and perceptions of hospice, and hospice utilization. Results: Between 2/2017 and 1/2019, we enrolled 55.7% (150/269) of potentially eligible patients and 44 caregivers. Post-intervention, patients assigned to the video group were more likely to prefer hospice care (86.7% vs. 82.7%, OR = 2.85, P = 0.08), but this was not statistically significant. Patients in the video group reported greater knowledge about hospice (B = 0.50, P = 0.024) and were less likely to endorse that hospice care is only about death (6.7% vs. 21.6%, OR = 0.28, P = 0.035). Among patients who died (n = 116), those assigned to the intervention were more likely to utilize hospice (85.2% vs. 63.6%, P = 0.01) and had a longer hospice length-of-stay (LOS) (median 12 vs. 3 days, P < 0.001). Post-intervention, caregivers assigned to the video were more likely to prefer hospice care for their loved ones (94.4% vs. 65.4%, P = 0.031), reported greater knowledge about hospice (B = 1.94, P < 0.001), and were less likely to endorse that hospice care is only about death (0.0% vs. 23.1%, P = 0.066). Conclusions: Patients with advanced cancer and their caregivers who viewed a hospice video decision aid were more informed about hospice, reported more favorable perceptions of hospice, and were more likely to utilize hospice and have a longer hospice LOS. Clinical trial information: NCT03040102.
Implementation and dissemination of a shared mental model of palliative oncology.
Authors: D'Ambruoso Sarah F. , Glaspy John A. , Wenger Neil , Pietras Christopher , Ahmed Kauser , Hurvitz Sara A. , Drakaki Alexandra , Goldman Jonathan Wade , Anand Sidharth , Simon Wendy , Kung Jennie , Coscarelli Anne , Rosen Lee S. , Peddi Parvin F. , Wong Deborah J.L. , Phung Peter , Karlin Daniel , Walling Anne M.
Published: November 2019

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Background: American Society of Clinical Oncology guidelines support early integration of palliative care (PC) into standard oncology practice; however, little is known as to whether improved outcomes can be achieved by modifying health care delivery and training oncology providers. Methods: We report our five year experience of embedding a nurse practitioner (NP) in an oncology clinic (March 2014-March 2019) to develop a shared mental model (SMM) of early, concurrent advance care planning (ACP) and PC as well as the collaborative effort to further disseminate this SMM throughout the Division of Hematology-Oncology using communication training, quality measurement, audit and feedback, leadership support, and monthly collaborative meetings. We developed PC quality metrics (process measures and end of life utilization measures) using a validated advanced cancer denominator. We used these measures to evaluate the impact of the PC-NP program (2014-2019) and provide individualized metric packets to each oncologist in the context of an annual half-day interactive communication training sessions (1-hr didactic, 3-hr small group role-play) each spring and monthly implementation team meetings from 2017-2019. Results: Compared to patients with advanced cancer not seen by the PC-NP program, patients who are enrolled in the program have higher rates of goals of care note documentation (80% vs. 17%, p < 0.01), higher rates of Physician Orders for Life Sustaining Treatment (POLST) completion (19% vs. 5%, p < 0.01), higher referral rates to the psychosocial oncology program (51% vs. 25%, p < 0.01), and higher referral rates to hospice (60% vs. 33%, p < 0.01). Among decedents, there was less hospital use (12 vs. 18 days) and ICU use (1.5 vs. 2.6 days) in the last 6 months of life. Since spring 2017, 19/21 NP’s, 64/68 physicians, and 17/20 fellows have participated in communication training. Among all patients with advanced cancer, goals of care note documentation has improved from 3% in March 2014 to 21% in March 2019. Conclusions: Embedding a trained PC-NP in oncology clinics to deliver upstream PC to patients on active treatment can lead to opportunities for development and dissemination of a SMM that translates into better primary and specialist PC.