Publications by authors named "Lauren Taylor"

106 Publications

Aberrant splicing and transcriptional activity of TPP1 result in CLN2-like disorder.

Eur J Med Genet 2021 Aug 11;64(8):104259. Epub 2021 Jun 11.

Murdoch Children's Research Institute, The Royal Children's Hospital, Victoria, Australia; Institute for Molecular Bioscience, The University of Queensland, Queensland, Australia. Electronic address:

RNA sequencing (RNAseq) is emerging as a complementary tool to DNA sequencing, providing utility in diagnosis for disorders such as neuronal ceroid lipofuscinosis CLN2 disease. We describe an individual with a presentation suggestive of an attenuated CLN2 phenotype, including a history of regression, recent-onset microcephaly and spasticity from age five years. Exome sequencing revealed two variants inherited in trans in TPP1, NM_000391.4:c.225A>G; p.(Gln75 = ) and NM_000391.4:c.1012C>G; p.(Gln338Glu), both classified as variants of uncertain significance. TPP1 activity was found to be significantly reduced in fibroblasts of the affected individual. RNAseq was performed to assess the impact of compound heterozygous variants in TPP1 and enabled the identification of three aberrant splicing events. The c.225A>G variant introduces a 5 nucleotide truncation of exon 3 and a loss of reading frame. The majority of CLN2 transcripts exclude either exon 8 or exons 7-8, resulting in large in-frame deletions. Isoform specific RT-PCR confirmed the aberrant splicing events are mutually exclusive, suggesting that the paternal exon 8 c.1012C>G variant results in exon skipping. This case study demonstrates how RNAseq can be used as an orthogonal test to inform the interpretation of some variants of unknown significance and its particular importance in disorders where effective disease management requires early diagnosis.
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http://dx.doi.org/10.1016/j.ejmg.2021.104259DOI Listing
August 2021

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand.

Autism 2021 May 17:13623613211015757. Epub 2021 May 17.

Telethon Kids Institute, The University of Western Australia, Australia.

Lay Abstract: Many clinicians in New Zealand do not follow guidelines for best practice in autism diagnosis. In this study, we investigated the processes that health professionals in New Zealand follow when diagnosing autistic children and adults. We asked 117 health professionals from a range of services and regions in New Zealand, how they identify and diagnose autism. We found that there are differences in the way that clinicians in New Zealand diagnose autism. We identified areas in which autism diagnosis in New Zealand could be improved, for example, by establishing more services to diagnose autism in adolescents and adults, and providing more consistent support after a person is diagnosed with autism. These findings will help to improve autism diagnosis in New Zealand.
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http://dx.doi.org/10.1177/13623613211015757DOI Listing
May 2021

The profile of pragmatic language impairments in children with ADHD: A systematic review.

Dev Psychopathol 2021 May 11:1-23. Epub 2021 May 11.

Okinawa Institute of Science and Technology, Graduate University, Okinawa, Japan.

This systematic review synthesizes the empirical literature examining pragmatic language in children diagnosed with attention-deficit/hyperactivity disorder (ADHD). Using a taxonomy of pragmatic language, we compared the pragmatic language profiles of children with ADHD to those of typically developing (TD) children and children with autism. Three databases were searched up to October 2019: PsychInfo; PubMed; and CSA Linguistics and Language Behavior Abstracts. We included 34 studies reporting on 2,845 children (ADHD = 1,407; TD = 1,058; autism = 380). Quality and risk of bias assessments included sample size and representativeness; measure reliability and validity; and missing data management. Children with ADHD were found to have higher rates of pragmatic difficulties than their TD peers. Specific difficulties were identified with inappropriate initiation, presupposition, social discourse, and narrative coherence. Children with ADHD appear to differ from those with autism in the degree of their pragmatic language impairments. General language skills contribute to, but do not explain, pragmatic difficulties in samples of children with ADHD. Though the extant evidence is limited, a preliminary profile of the pragmatic language impairments in children with ADHD is indicated. This supports a call for evidence-based interventions that include pragmatic language skills training.
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http://dx.doi.org/10.1017/S0954579421000328DOI Listing
May 2021

Survey of plastic surgery trainee attitudes to a career as a burns surgeon: A potential workforce dilemma.

Burns 2021 Apr 7. Epub 2021 Apr 7.

Department of Plastic Surgery and Burns, Pinderfields Hospital, Mid Yorkshire NHS Trust, UK.

Aim And Method: The aim of this study was to gain insight into potential pitfalls in workforce planning for future consultant burns surgeons. An anonymous online survey was sent to current plastic surgery registrars in the UK to assess their subspecialty career choices, the perceived barriers to a career in burns surgery and possible solutions to these.

Results: The response rate was 33%. Of 44 respondents, burns surgery was the primary subspecialty of choice for 2% (n = 1) and the secondary choice for 9% (n = 4). Reasons given for not selecting burns surgery included a lack of exposure to the subspecialty, a perceived narrow scope of clinical practice and a concern about the potential negative impact on personal lifestyle.

Discussion And Conclusion: Our results may be extrapolated to demonstrate a potential shortfall in the workforce for burns surgery in the future. To address the perceived barriers highlighted by trainees, a coordinated response at a national and international level is most likely to be successful through the cooperation of burns associations. Possible solutions include increasing burns subspecialty exposure during training, incorporating experience in intensive care into surgical training, and highlighting the numerous research opportunities in burns surgery.
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http://dx.doi.org/10.1016/j.burns.2021.03.008DOI Listing
April 2021

Analysis of Recent Literature on Lung Volume Reduction Surgery.

Thorac Surg Clin 2021 May;31(2):119-128

Division of Cardiothoracic Surgery, Department of Surgery, University of Wisconsin-Madison, 600 Highland Avenue, H4/340, Madison, WI 53792-0001, USA. Electronic address:

Publication of the National Emphysema Treatment Trial (NETT) in 2003 established lung volume reduction surgery (LVRS) as a viable treatment of select patients with moderate to severe emphysema, and the only intervention since the availability of ambulatory supplemental oxygen to improve survival. Despite these findings, surgical treatment has been underused in part because of concern for high morbidity and mortality. This article reviews recent literature generated since the original NETT publication, focusing on physiologic implications of LVRS, recent data regarding the safety and durability of LVRS, and patient selection and extension of NETT criteria to other patient populations.
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http://dx.doi.org/10.1016/j.thorsurg.2021.01.003DOI Listing
May 2021

A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood.

J Autism Dev Disord 2021 Mar 31. Epub 2021 Mar 31.

Telethon Kids Institute, University of Western Australia, PO Box 855, Perth, WA, 6872, Australia.

The diagnostic experiences of autistic adults in New Zealand have not been investigated and little is known globally about autistic adults' satisfaction with the autism diagnostic process. This study describes the diagnostic experiences of 70 autistic adults living in New Zealand and explores how these experiences are related to satisfaction during three stages of the diagnostic process. The results show that autistic adults were reasonably satisfied with the early query and diagnostic assessment stages, but were dissatisfied with the post-diagnostic support stage, with significant unmet needs. Dissatisfaction during the post-diagnostic support stage was also related to satisfaction during previous stages and poor coordination of supports. Suggestions are made on how to improve the autism diagnostic pathway for autistic adults in New Zealand.
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http://dx.doi.org/10.1007/s10803-021-04983-0DOI Listing
March 2021

Which Factors Influence Teacher Report of Adaptive Functioning in Autistic Children?

J Autism Dev Disord 2021 Mar 12. Epub 2021 Mar 12.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Walkergate Park, Benfield Rd, Newcastle upon Tyne, NE6 4QD, UK.

A wealth of parent-report research shows adaptive functioning difficulties in autistic children, with parent-report influenced by a number of child factors. Adaptive functioning in autistic children is known to vary across settings; however, no research has yet explored factors influencing education professional-report. This study investigated the rate and profile of impairment, and child factors influencing education professional-reported adaptive skills in 248 autistic children. Twelve children were < 3 years (min age for available normative data on the adaptive function measure), so were removed from the analyses. Results replicated parent-literature; adaptive skills were negatively associated with age and informant-reported autism severity, and positively associated with nonverbal ability and expressive language. Adaptive functioning is important for real-world outcomes, e.g. educational attainment, independence, and support needs. Improving our understanding of adaptive functioning in the education context may support opportunities for shared learning and enhance personalised support .
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http://dx.doi.org/10.1007/s10803-021-04930-zDOI Listing
March 2021

Role of procedural intervention and acute illness in veterans affairs smoking cessation program referrals: A retrospective study.

Tob Prev Cessat 2021 11;7. Epub 2021 Jan 11.

Department of Surgery, William S. Middleton Memorial Veterans Hospital, Madison, United States.

Introduction: Tobacco use remains pervasive amongst veterans. Unfortunately, the negative impact on postoperative outcomes may preclude surgeons from offering operative intervention to veterans who smoke. As such, a major health event may provide added incentive to quit. We sought to describe the role of acute illness and interventional specialist involvement in Veterans Affairs Smoking Cessation Program referrals compared to primary care wellness initiatives.

Methods: We retrospectively reviewed consultations to the pharmacy-led Smoking Cessation Program (SCP) at the Middleton Memorial VA Hospital from 2017 to 2019. Consultations placed during the last three months were categorized based on the source of referral: primary care, acute care, and interventional specialties. Descriptive statistics were used to assess rates of veteran engagement based on referral source. Consultation completion was used as a proxy for veteran engagement.

Results: A total of 2993 new SCP consultations were placed during the study period. Overall, veteran engagement rose from 43% in 2017 to 53% in 2019. In recent months, there were 282 SCP referrals. While only 19 (7%) of these referrals were placed by interventional specialties - primarily cardiology and thoracic surgery - the rate of veteran engagement was 63%. The majority of referrals (65%) were placed by primary care providers with an engagement rate of 68%. In contrast, only 42% of consultations placed in the context of an acute illness were completed.

Conclusions: In our study, primary care directed smoking cessation referrals were most prevalent and resulted in the highest completion rates. The presence of an acute illness in isolation failed to impact program success. However, while surgeon-initiated referrals were meager in number, the engagement rate approached that of primary care. This finding suggests that surgeons play a powerful role in influencing patient behavior that may be harnessed to augment success of existing smoking cessation programs.
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http://dx.doi.org/10.18332/tpc/130776DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7811355PMC
January 2021

Money Moves the Mare: The Response of Community-Based Organizations to Health Care's Embrace of Social Determinants.

Milbank Q 2021 03 8;99(1):171-208. Epub 2021 Jan 8.

Department of Medicine, Tufts University School of Medicine and Institute for Clinical Research and Health Policy Studies, Tufts Medical Center.

Policy Points Health policies that encourage health and social integration can induce community-based organizations (CBOs) to adopt new ways of working from health care organizations, including their language, staffing patterns, and metrics. These changes can be explained by CBOs' perceptions that health care organizations may provide new sources of revenue. While the welfare implications of these changes are not yet known, policymakers should consider balancing the benefits of professionalizing CBOs against the risks of medicalizing them.

Context: Recent health policies incentivize health care providers to collaborate with community-based organizations (CBOs), such as food pantries and homeless shelters, to address patients' social determinants of health (SDOH). The perspectives of health care leaders on these policy changes have been studied, but the perspectives of CBO managers have not.

Methods: Our research question was: How are CBOs in Massachusetts perceiving and responding to new Medicaid policies that encourage collaboration between health care organizations and CBOs? We interviewed 46 people in leadership positions at CBOs in Massachusetts for approximately an hour each. We analyzed these data abductively, meaning that we iterated between inductively coding transcripts and consulting existing theories and frameworks.

Findings: We found evidence of a knowing-doing gap among CBOs. Even though CBOs value their distinctiveness and autonomy from health care, they have undertaken a series of organizational changes in response to the new Medicaid policy that make their organizations appear more like health care organizations. These changes include adopting new performance metrics, hiring clinical staff to the board and senior management positions, and using medical language to describe nonmedical work. Drawing on institutional theory, we suggest that the nonprofits undertake such changes in an effort to demonstrate legitimacy to health care organizations, who may be able to provide new sources of critically needed revenue.

Conclusions: Massachusetts CBOs perceive health systems as potential sources of revenue, due in part to an ongoing Medicaid redesign that encourages the integration of health and social services. This perception is driving CBOs to appear more like health care organizations, but the impacts of these changes on welfare remain unknown.
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http://dx.doi.org/10.1111/1468-0009.12491DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7984660PMC
March 2021

Research and Responsibility in Global Health: An Analysis of the Joining Forces Study in Ghana.

Kennedy Inst Ethics J 2020 ;30(2):111-139

We explore conceptions of responsibility and integrity in global health research and practice as it is being carried out in the academic setting. Our specific motivation derives from the recent publication of a study by a clinical research team involving the delivery of mental health care services in a Ghanaian prayer camp. The study was controversial on account of the prayer camp's history of human rights abuses and therefore was met with several high-profile critiques. We offer a more charitable evaluation of the Joining Forces study. Our analysis has three primary goals. First, we respond to criticism suggesting that the Joining Forces research team needed to maintain some form of morally "clean hands" in relation to the human rights abuses at Mount Horeb prayer camp. We argue that, for academic global health practitioners working under severe resource constraints, what is reasonable and responsible to pursue is a complex proposition without a one-size-fits-all ethical answer. Second, we offer an explanation for why the Joining Forces study team designed the project as they did in spite of their obvious vulnerability to ethical concern. We argue that the Joining Forces study was a morally risky, but ethically earnest effort to reach a neglected patient population and promote behavior change in prayer camp staff. Third, we identify an open ethical question born of the researchers' commitment to pragmatism that, to our knowledge, has not been previously addressed in published discussion of the Joining Forces project. Namely, was the incomplete disclosure of information to prayer camp staff defensible? We close with a broader reflection on the notion of moral integrity in the pursuit of the salutary aims of global health.
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http://dx.doi.org/10.1353/ken.2020.0008DOI Listing
January 2020

The association between factors promoting non-beneficial surgery and moral distress: A national survey of surgeons.

Ann Surg 2020 Nov 17. Epub 2020 Nov 17.

Department of Medical History and Bioethics, University of Wisconsin School of Medicine and Public Health, Madison, WI.

Objective: To assess the prevalence of moral distress among surgeons and test the association between factors promoting non-beneficial surgery and surgeons' moral distress.

Summary Background Data: Moral distress experienced by clinicians can lead to low-quality care and burnout. Older adults increasingly receive invasive treatments at the end of life that may contribute to surgeons' moral distress, particularly when external factors, such as pressure from colleagues, institutional norms, or social demands, push them to offer surgery they consider non-beneficial.

Methods: We mailed surveys to 5,200 surgeons randomly selected from the American College of Surgeons membership, which included questions adapted from the revised Moral Distress Scale. We then analyzed the association between factors influencing the decision to offer surgery to seriously ill older adults and surgeons' moral distress.

Results: The weighted adjusted response rate was 53% (n = 2,161). Respondents whose decision to offer surgery was influenced by their belief that pursuing surgery gives the patient or family time to cope with the patient's condition were more likely to have high moral distress (34% vs 22%, p < 0.001), and this persisted on multivariate analysis (OR 1.44, 95% CI 1.02-2.03). Time required to discuss non-operative treatments or the consulting intensivists' endorsement of operative intervention, were not associated with high surgeon moral distress.

Conclusions: Surgeons experience moral distress when they feel pressured to perform surgery they believe provides no clear patient benefit. Strategies that empower surgeons to recommend non-surgical treatments when they believe this is in the patient's best interest may reduce non-beneficial surgery and surgeon moral distress.
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http://dx.doi.org/10.1097/SLA.0000000000004554DOI Listing
November 2020

Institutionalising global health: a call for ethical reflection.

BMJ Glob Health 2020 09;5(9)

Population Health, NYU Grossman School of Medicine, New York, New York, USA.

We describe a global health course and pedagogy that highlights the moral ambiguity and many ethical compromises that have emerged as the discipline has increasingly become institutionalised. We encourage students to reflect on how the oft-declared aspiration for global health equity still remains seriously contested as a normative and political matter, especially in settings like the USA. We further encourage students to reflect on how authentic concern for social justice, health equity and human rights are consistently undermined by unconscious and/or intentional fealty to standard operating procedures within hierarchical structures and systems. Lastly, we encourage students to openly question and critique the dominant socioeconomic and institutional paradigms that influence practitioner ways of thinking about global health. Our aim is to provide a learning space for students to at least imagine, if not demand, more daring modes of engagement. We also encourage our colleagues in the global health education community to be forthright that the process of institutionalising global health reliably favours our own interests more than those we claim to be most concerned about. If the ideal of global health is to build a bridge to human solidarity, we see substantial risk that current popularised approaches might never yield a structural tipping point.
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http://dx.doi.org/10.1136/bmjgh-2020-003353DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7500186PMC
September 2020

Sub-lethal effects of permethrin exposure on a passerine: implications for managing ectoparasites in wild bird nests.

Conserv Physiol 2020 8;8(1):coaa076. Epub 2020 Sep 8.

Charles Darwin Research Station, Charles Darwin Foundation, Puerto Ayora, Santa Cruz Island, Galápagos Islands, Ecuador.

Permethrin is increasingly used for parasite control in bird nests, including nests of threatened passerines. We present the first formal evaluation of the effects of continued permethrin exposure on the reproductive success and liver function of a passerine, the zebra finch (), for two generations. We experimentally treated all nest material with a 1% permethrin solution or a water control and provided the material to breeding finches for nest building. The success of two consecutive clutches produced by the parental generation and one clutch produced by first-generation birds were tracked. Finches in the first generation were able to reproduce and fledge offspring after permethrin exposure, ruling out infertility. Permethrin treatment had no statistically significant effect on the number of eggs laid, number of days from clutch initiation to hatching, egg hatch rate, fledgling mass or nestling sex ratio in either generation. However, treating nest material with permethrin significantly increased the number of hatchlings in the first generation and decreased fledgling success in the second generation. Body mass for hatchlings exposed to permethrin was lower than for control hatchlings in both generations, but only statistically significant for the second generation. For both generations, an interaction between permethrin treatment and age significantly affected nestling growth. Permethrin treatment had no effect on liver function for any generation. Permethrin was detected inside 6 of 21 exposed, non-embryonated eggs (28.5% incidence; range: 693-4781 ng of permethrin per gram of dry egg mass). Overall, results from exposing adults, eggs and nestlings across generations to permethrin-treated nest material suggest negative effects on finch breeding success, but not on liver function. For threatened bird conservation, the judicious application of this insecticide to control parasites in nests can result in lower nestling mortality compared to when no treatment is applied. Thus, permethrin treatment benefits may outweigh its sub-lethal effects.
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http://dx.doi.org/10.1093/conphys/coaa076DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7416766PMC
September 2020

How State Scope-of-Practice Policies Impact NP Care.

Am J Nurs 2020 09;120(9):21-22

Lauren N. Taylor is an Oak Ridge Institute for Science and Education fellow and Siobhan Gilchrist is an IHRC, Inc., public health policy analyst, both in the Division for Heart Disease and Stroke Prevention at the Centers for Disease Control and Prevention, Atlanta. Contact author: Lauren N. Taylor, The authors have disclosed no potential conflicts of interest, financial or otherwise. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Three projects examine the effect of NP practice acts on access to health care.
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http://dx.doi.org/10.1097/01.NAJ.0000697604.30231.b0DOI Listing
September 2020

Fetal safety of nicotine replacement therapy in pregnancy: systematic review and meta-analysis.

Addiction 2021 02 1;116(2):239-277. Epub 2020 Oct 1.

Division of Primary Care, Faculty of Medicine and Health Sciences, University of Nottingham, UK.

Background And Aims: Smoking in pregnancy causes substantial avoidable harm to mothers and offspring; nicotine replacement therapy (NRT) may prevent this, and is used to help women to quit. A recently updated Cochrane Review of randomized controlled trials (RCTs) investigating impacts of NRT in pregnancy focuses primarily on efficacy data, but also reports adverse impacts from NRT. Here we identify and summarize NRT impacts on adverse pregnancy outcomes reported in non-randomized controlled trials (non-RCTs).

Methods: Systematic reviews and meta-analyses of RCTs and non-RCT studies of NRT in pregnancy, with design-specific risk of bias assessment and grading of recommendations, assessment, development and evaluations (GRADE) criteria applied to selected outcomes.

Findings: Relevant Cochrane Review findings are reported alongside those from this new review. Seven RCTs were included; n = 2340. Nine meta-analyses were performed; non-statistically significant estimates indicated potentially reduced risk from NRT compared with smoking for mean birth weight, low birth weight, preterm birth, intensive care admissions, neonatal death, congenital anomalies and caesarean section and potentially increased risks for miscarriage and stillbirth. GRADE assessment for mean birth weight and miscarriage outcomes indicated 'low' confidence in findings. Twenty-three non-RCTs were included; n = 931 163. Eleven large studies from five routine health-care cohorts reported clinical outcomes; 12 small studies investigated mainly physiological outcomes within in-patient women given NRT. Findings from meta-analyses for congenital anomalies, stillbirth and preterm birth were underpowered and not in a consistent direction; GRADE assessment of confidence in findings was 'very low'. Routine health-care studies were of higher quality, but implications of reported findings were unclear as there was inadequate measurement and reporting of women's smoking.

Conclusions: Available evidence from randomized controlled trials and non-randomized comparative studies does not currently provide clear evidence as to whether maternal use of nicotine replacement therapy during pregnancy is harmful to the fetus.
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http://dx.doi.org/10.1111/add.15185DOI Listing
February 2021

Balancing supply and demand: Review of the 2018 donor heart allocation policy.

J Card Surg 2020 Jul 12;35(7):1583-1588. Epub 2020 May 12.

Division of Cardiothoracic Surgery, Department of Surgery, University of Wisconsin, Madison, Wisconsin.

Heart transplant remains the most effective treatment for patients with end stage heart failure. Advances in mechanical circulatory support devices have changed the therapeutic landscape and contributed to a demographic shift in patients awaiting transplant. In the setting of a growing waitlist and concern for an inability of current policies to accurately account for patient acuity and equitable geographic distribution of organs, the United Network for Organ Sharing developed a new donor heart allocation policy which was introduced in 2018. The new policy creates more precise listing criteria to reflect patient acuity, addresses previously marginalized groups, and takes steps to address geographic inequalities.
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http://dx.doi.org/10.1111/jocs.14609DOI Listing
July 2020

Perovskite-Carbon Nanotube Light-Emitting Fibers.

Nano Lett 2020 05 4;20(5):3178-3184. Epub 2020 May 4.

Kavli Energy Nanoscience Institute, University of California Berkeley, Berkeley, California 94720, United States.

Active fibers with electro-optic functionalities are promising building blocks for the emerging and rapidly growing field of fiber and textile electronics. Yet, there remains significant challenges that require improved understanding of the principles of active fiber assembly to enable the development of fiber-shaped devices characterized by having a small diameter, being lightweight, and having high mechanical strength. To this end, the current frameworks are insufficient, and new designs and fabrication approaches are essential to accommodate this unconventional form factor. Here, we present a first demonstration of a pathway that effectively integrates the foundational components meeting such requirements, with the use of a flexible and robust conductive core carbon nanotube fiber and an organic-inorganic emissive composite layer as the two critical elements. We introduce an active fiber design that can be realized through an all solution-processed approach. We have implemented this technique to demonstrate a three-layered light-emitting fiber with a coaxially coated design.
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http://dx.doi.org/10.1021/acs.nanolett.9b05225DOI Listing
May 2020

Cardiothoracic Education in the Time of COVID-19: How I Teach It.

Ann Thorac Surg 2020 08 10;110(2):362-363. Epub 2020 Apr 10.

Department of Surgery, Division of Cardiothoracic Surgery, University of Wisconsin, Madison, Wisconsin. Electronic address:

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http://dx.doi.org/10.1016/j.athoracsur.2020.04.002DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7151493PMC
August 2020

The relationship between common risk factors and the pathology of pressure ulcer development: a systematic review.

J Wound Care 2020 Mar;29(Sup3):S4-S12

15 School of Nursing and Midwifery, Royal College of Surgeons in Ireland.

Objective: The aim of this systematic review was to examine the associations and relationship between commonly cited risk factors and the pathology of pressure ulcer (PU) development.

Method: Using systematic review methodology, original research studies, prospective design and human studies written in English were included. The search was conducted in March 2018, using Ovid, Ovid EMBASE and CINAHL databases. Data were extracted using a pre-designed extraction tool and all included studies were quality appraised using the evidence-based librarianship critical appraisal.

Results: A total of 382 records were identified, of which five met the inclusion criteria. The studies were conducted between 1994 and 2017. Most studies were conducted in hospital and geriatric wards. The mean sample size was 96±145.7 participants. Ischaemia, recovery of blood flow and pathological impact of pressure and shear was mainly found as the cited risk factor and PU aetiology.

Conclusion: This review systematically analysed five papers exploring the relationship between risk factors for PU development and aetiology. It identified many risk factors and underlying pathological mechanisms that interact in the development of PU including ischaemia, stress, recovery of blood flow, tissue hypoxia and the pathological impact of pressure and shear. There are several pathways in which these pathological mechanisms contribute to PU development and identifying these could establish potential ways of preventing or treating the development of PU for patients.
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http://dx.doi.org/10.12968/jowc.2020.29.Sup3.S4DOI Listing
March 2020

Does persistent use of radiation in women > 70 years of age with early-stage breast cancer reflect tailored patient-centered care?

Breast Cancer Res Treat 2020 Apr 3;180(3):801-807. Epub 2020 Mar 3.

Department of Surgery, University of Wisconsin, Madison, WI, USA.

Purpose: Randomized controlled trials demonstrate that omission of radiation therapy (RT) in older women with early-stage cancer undergoing breast conserving surgery (BCS) is an "acceptable choice." Despite this, high RT rates have been reported. The objective was to evaluate the impact of patient- and system-level factors on RT rates in a contemporary cohort.

Methods: Through the National Cancer Data Base, we identified women with clinical stage I estrogen receptor-positive breast cancer who underwent BCS (n = 84,214). Multivariable logistic regression identified patient, tumor, and system-level factors associated with RT. Joinpoint regression analysis calculated trends in RT use over time stratified by age and facility-type, reporting annual percent change (APC).

Results: RT rates decreased from 2004 (77.2%) to 2015 (64.3%). The decline occurred earliest and was most pronounced in older women treated at academic facilities. At academic facilities, the APC was - 5.6 (95% CI - 8.6, - 2.4) after 2009 for women aged > 85 years, - 6.4 (95% CI - 9.0, - 3.8) after 2010 for women aged 80 -  < 85 years, - 3.7 (95% CI - 5.6, - 1.9) after 2009 for women aged 75 -  < 80, and - 2.4 (95% CI, - 3.1, - 1.6) after 2009 for women aged 70 -  < 75. In contrast, at community facilities rates of RT declined later (2011, 2012, and 2013 for age groups 70-74, 75-79, and 80-84 years).

Conclusions: RT rates for older women with early-stage breast cancer are declining with patient-level variation based on factors related to life expectancy and locoregional recurrence. Facility-level variation suggests opportunities to improve care delivery by focusing on barriers to de-implementation of routine use of RT.
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http://dx.doi.org/10.1007/s10549-020-05579-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7474974PMC
April 2020

A Replicable Approach to Promoting Best Practices: Translating Cardiovascular Disease Prevention Research.

J Public Health Manag Pract 2021 Mar-Apr 01;27(2):109-116

National Center for Chronic Disease Prevention and Health Promotion (Drs Hawkins, Bernard, and Jones, Mss Bhuiya, Shantharam, Taylor, and Moeti, and Messrs Chapel and Schooley) and National Center for Injury Prevention (Ms Thigpen), Centers for Disease Control and Prevention, Atlanta, Georgia; Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee (Mss Bhuiya and Taylor and Mr Chapel); IHRC, Inc, Atlanta, Georgia (Ms Shantharam); and The Ohio State University College of Medicine, Columbus, Ohio (Ms Decker).

Objective: Significant delays in translating health care-related research into public health programs and medical practice mean that people may not get the best care when they need it. Regarding cardiovascular disease, translation delays can mean lives may be unnecessarily lost each year. To facilitate the translation of knowledge to action, we created a Best Practices Guide for Cardiovascular Disease Prevention Programs.

Design: Using the Rapid Synthesis Translation Process and the Best Practices Framework as guiding frameworks, we collected and rated research evidence for hypertension control and cholesterol management strategies. After identifying best practices, we gathered information about programs that were implementing the practices and about resources useful for implementation. Research evidence and supplementary information were consolidated in an informational resource and published online. Web metrics were collected and analyzed to measure use and reach of the guide.

Results: The Best Practices Guide was released in January 2018 and included background information and resources on 8 best practice strategies. It was published as an online resource, publicly accessible from the Centers for Disease Control and Prevention Web site in 2 different formats. Web metrics show that in the first year after publication, there were 25 589 Web page views and 2467 downloads. A query of partner use of the guide indicated that it was often shared in partners' own resources, newsletters, and online material.

Conclusion: In following a systematic approach to creating the Best Practices Guide and documenting the steps taken in its development, we offer a replicable approach for translating research on health care practices into a resource to facilitate implementation. The success of this approach is attributed to 3 key factors: using a prescribed and documented approach to evidence translation, working closely with stakeholders throughout the process, and prioritizing the content design and accessibility of the final product.
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http://dx.doi.org/10.1097/PHH.0000000000001095DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8058617PMC
February 2020

Mapping and Analysis of US State and Urban Local Sodium Reduction Laws.

J Public Health Manag Pract 2020 Mar/Apr;26 Suppl 2, Advancing Legal Epidemiology:S62-S70

Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee (Mss Sloan, Bhuiya, Taylor, and Bates); National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia (Mss Sloan, Rutledge Pettie, Bhuiya, Taylor, Bates, and Gilchrist, Mr Keane, and Dr Bernard); VMG, Inc, Alpharetta, Georgia (Mr Akinleye); and IHRC, Inc, Atlanta, Georgia (Ms Gilchrist). Ms Rutledge Pettie is now with Board of Regents of the University System of Georgia, Atlanta, Georgia. Ms Bates is now with Panum Group LLC, Bethesda, Maryland and the Center for Nutrition Policy and Promotion, United States Department of Agriculture, Alexandria, Virginia. Ms Bhuiya is now at Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Ontario, Canada.

Context: Excessive sodium consumption contributes to high blood pressure, which is a risk factor for cardiovascular disease.

Objectives: To (1) identify state and urban local laws addressing adult or general population sodium consumption in foods and beverages and (2) align findings to a previously published evidence classification review, the Centers for Disease Control and Prevention Sodium Quality and Impact of Component (QuIC) evidence assessment.

Design: Systematic collection of sodium reduction laws from all 50 states, the 20 most populous counties in the United States, and the 20 most populous cities in the United States, including Washington, District of Columbia, effective on January 1, 2019. Relevant laws were assigned to 1 or more of 6 interventions: (1) provision of sodium information in restaurants or at point of purchase; (2) consumer incentives to purchase lower sodium foods; and provision of lower sodium offerings in (3) workplaces, (4) vending machines, (5) institutional meal services, and (6) grocery, corner, and convenience stores. The researchers used Westlaw, local policy databases or city Web sites, and general nutrition policy databases to identify relevant laws.

Results: Thirty-nine sodium reduction laws and 10 state laws preempting localities from enacting sodium reduction laws were identified. Sodium reduction laws were more common in local jurisdictions and in the Western United States. Sodium reduction laws addressing meal services (n = 17), workplaces (n = 12), labeling (n = 13), and vending machines (n = 11) were more common, while those addressing grocery stores (n = 2) or consumer incentives (n = 6) were less common. Laws with high QuIC evidence classifications were generally more common than laws with low QuIC evidence classifications.

Conclusions: The distribution of sodium laws in the US differed by region, QuIC classification, and jurisdiction type, indicating influence from public health and nonpublic health factors. Ongoing research is warranted to determine how the strength of public health evidence evolves over time and how those changes correlate with uptake of sodium reduction law.
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http://dx.doi.org/10.1097/PHH.0000000000001124DOI Listing
April 2021

Establishing a Baseline: Evidence-Supported State Laws to Advance Stroke Care.

J Public Health Manag Pract 2020 Mar/Apr;26 Suppl 2, Advancing Legal Epidemiology:S19-S28

Division for Heart Disease and Stroke Prevention, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, Georgia (Mss Gilchrist, Sloan, Bhuiya, Taylor, Shantharam, and Fulmer and Dr Barbero); IHRC, Inc, Atlanta, Georgia (Mss Gilchrist and Shantharam); and Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee (Mss Sloan, Bhuiya, and Taylor). Ms Bhuiya is now at the Institute of Health Policy, Management, and Evaluation, University of Toronto, Ontario, Canada.

Objective: Approximately 800 000 strokes occur annually in the United States. Stroke systems of care policies addressing prehospital and in-hospital care have been proposed to improve access to time-sensitive, lifesaving treatments for stroke. Policy surveillance of stroke systems of care laws supported by best available evidence could reveal potential strengths and weaknesses in how stroke care delivery is regulated across the nation.

Design: This study linked the results of an early evidence assessment of 15 stroke systems of care policy interventions supported by best available evidence to a legal data set of the body of law in effect on January 1, 2018, for the 50 states and Washington, District of Columbia.

Results: As of January 1, 2018, 39 states addressed 1 or more aspects of prehospital or in-hospital stroke care in law; 36 recognized at least 1 type of stroke center. Thirty states recognizing stroke centers also had evidence-supported prehospital policy interventions authorized in law. Four states authorized 10 or more of 15 evidence-supported policy interventions. Some combinations of prehospital and in-hospital policy interventions were more prevalent than other combinations.

Conclusion: The analysis revealed that many states had a stroke regulatory infrastructure for in-hospital care that is supported by best available evidence. However, there are gaps in how state law integrates evidence-supported prehospital and in-hospital care that warrant further study. This study provides a baseline for ongoing policy surveillance and serves as a basis for subsequent stroke systems of care policy implementation and policy impact studies.
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http://dx.doi.org/10.1097/PHH.0000000000001126DOI Listing
April 2021

Translating Workforce Development Policy Interventions for Community Health Workers: Application of a Policy Research Continuum.

J Public Health Manag Pract 2020 Mar/Apr;26 Suppl 2, Advancing Legal Epidemiology:S10-S18

Division for Heart Disease and Stroke Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia (Mss Fulmer, Bhuiya, and Taylor and Drs Barbero and Jones).

Context: There is a need for knowledge translation to advance health equity in the prevention and control of cardiovascular disease and type 2 diabetes. One recommended strategy is engaging community health workers (CHWs) to have a central role in related interventions. Despite strong evidence of effectiveness for CHWs, there is limited information examining the impact of state CHW policy interventions. This article describes the application of a policy research continuum to enhance knowledge translation of CHW workforce development policy in the United States.

Methods: During 2016-2019, a team of public health researchers and practitioners applied the policy research continuum, a multiphased systematic assessment approach that incorporates legal epidemiology to enhance knowledge translation of CHW workforce development policy interventions in the United States. The continuum consists of 5 discrete, yet interconnected, phases including early evidence assessments, policy surveillance, implementation studies, policy ratings, and impact studies.

Results: Application of the first 3 phases of the continuum demonstrated (1) how CHW workforce development policy interventions are linked to strong evidence bases, (2) whether existing state CHW laws are evidence-informed, and (3) how different state approaches were implemented.

Discussion: As a knowledge translation tool, the continuum enhances dissemination of timely, useful information to inform decision making and supports the effective implementation and scale-up of science-based policy interventions. When fully implemented, it assists public health practitioners in examining the utility of different policy intervention approaches, the effects of adaptation, and the linkages between policy interventions and more distal public health outcomes.
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http://dx.doi.org/10.1097/PHH.0000000000001123DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8106979PMC
April 2021

Brief Report: Associations Between Preverbal Social Communication Skills, Language and Symptom Severity in Children with Autism: An Investigation Using the Early Sociocognitive Battery.

J Autism Dev Disord 2020 Apr;50(4):1434-1442

Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK.

We investigated the early sociocognitive battery (ESB), a novel measure of preverbal social communication skills, in children with autism participating in the Paediatric Autism Communication Trial-Generalised (PACT-G). The associations between ESB scores, language and autism symptoms were assessed in 249 children aged 2-11 years. The results show that ESB subscale scores (social responsiveness, joint attention and symbolic comprehension) were significantly associated with concurrent autism symptoms and receptive and expressive language levels. The pattern of association between the ESB subscale scores differed between the ADOS-2 symptom domains and expressive and receptive language. These findings indicate the potential utility of the ESB as a measure of preverbal social communication in children with autism.
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http://dx.doi.org/10.1007/s10803-020-04364-zDOI Listing
April 2020

Epidemiology of isolated adult lower limb burns over 15 years with a focus on preventable work-related injuries.

Burns 2020 09 31;46(6):1432-1435. Epub 2019 Dec 31.

Department of Plastic Surgery and Burns, Pinderfields Hospital, Mid Yorkshire NHS Trust, United Kingdom.

Our aim was to describe the epidemiology of isolated adult lower limb burns presenting to the Pinderfields Regional Burns Centre, Wakefield, United Kingdom between 2003 and 2018. Data was obtained using our local records of the international Burn Injury Database (iBID). 6059 patients were treated in our department during this period. 18.7% presented with isolated lower limb burns (n = 1133). 65.4% of patients were male (n = 741). Scald was the most common mechanism of injury. Work-related burns accounted for 23.4% of the injuries (n = 265). 36% of patients were admitted (n = 408), and 11.7% underwent surgical intervention (n = 133). Isolated lower limb burns are common in patients in the working age group. Work-related injuries are preventable. Targeted education to highlight the risks, reduce the incidence, and improve awareness of first aid measures are recommended.
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http://dx.doi.org/10.1016/j.burns.2019.12.011DOI Listing
September 2020

The Challenge of Mutual Disclosure in Global Health Partnerships.

Perspect Biol Med 2019 ;62(4):657-674

Institutional partnerships in global health, those contractual relationships involving institutions from the Global North and the Global South for purposes of public health enhancement and academic research, often fail to live up to the expectations held by all parties involved. The literature generally argues that inequities are the main concern in global health partnerships. We break with previous analyses by proposing a conceptual model to explain the frequently poor quality of the relationships based on aspects of sameness between the parties, or what we call symmetries in the relationship. We suggest that certain symmetries in positioning, fears and misgivings, and behavior inhibit critical disclosure of relevant information that could improve the effectiveness of the partnership. We propose seven essential elements of building trust in these relationships, and we recommend an incremental approach that treats trust as both a desired outcome and a necessary process that must be developed slowly over time to enhance a partnership's success.
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http://dx.doi.org/10.1353/pbm.2019.0038DOI Listing
May 2020

Massachusetts Community-Based Organization Perspectives on Medicaid Redesign.

Am J Prev Med 2019 12;57(6 Suppl 1):S74-S81

Department of Health Policy and Management, Harvard Business School, Harvard University, Boston, Massachusetts.

Introduction: The purpose of the study is to investigate how community-based organizations perceive Medicaid policy changes to address the social determinants of health.

Methods: This study included 46 key informant interviews, representing 44 community-based organizations across Massachusetts conducted from September 2017 to March 2018. The interviews were designed to collect community-based organizations' perceptions of Medicaid policy changes. An Advisory Board was empaneled for feedback on data collection and analysis. Massachusetts was chosen as a study site in light of explicit policy efforts to incentivize healthcare organizations to take a more active role in social determinants of health, most notably through the creation of Medicaid Accountable Care Organizations.

Results: The community-based organizations expressed optimism about future partnerships with healthcare organizations. This optimism existed alongside the recognition that healthcare organizations and community-based organizations can have conflicting agendas, including misaligned outcomes of interest and timelines. Community-based organizations struggled to define a clear strategy for partnership in the face of incomplete information about how the final Medicaid redesign would proceed and what healthcare providers would be looking for in a partner.

Conclusions: Changes to Medicaid policy can catalyze interest in partnership between healthcare organizations and community-based organizations. To minimize the impact of conflicting agendas, policymakers and healthcare leadership should ensure community-based organizations are part of strategy development and social service program implementation.

Supplement Information: This article is part of a supplement entitled Identifying and Intervening on Social Needs in Clinical Settings: Evidence and Evidence Gaps, which is sponsored by the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services, Kaiser Permanente, and the Robert Wood Johnson Foundation.
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http://dx.doi.org/10.1016/j.amepre.2019.07.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734694PMC
December 2019

Effectiveness of a Question Prompt List Intervention for Older Patients Considering Major Surgery: A Multisite Randomized Clinical Trial.

JAMA Surg 2020 01;155(1):6-13

Department of Surgery, Oregon Health and Science University, Portland.

Importance: Poor preoperative communication can have serious consequences, including unwanted treatment and postoperative conflict.

Objective: To compare the effectiveness of a question prompt list (QPL) intervention vs usual care on patient engagement and well-being among older patients considering major surgery.

Design, Setting, And Participants: This randomized clinical trial used a stepped-wedge design to randomly assign patients to a QPL intervention (n = 223) or usual care (n = 223) based on the timing of their visit with 1 of 40 surgeons at 5 US study sites. Patients were 60 years or older with at least 1 comorbidity and an oncologic or vascular (cardiac, neurosurgical, or peripheral vascular) problem that could be treated with major surgery. Family members were also enrolled (n = 263). The study dates were June 2016 to November 2018. Data analysis was by intent-to-treat.

Interventions: A brochure of 11 questions to ask a surgeon developed by patient and family stakeholders plus an endorsement letter from the surgeon were sent to patients before their outpatient visit.

Main Outcomes And Measures: Primary patient engagement outcomes included the number and type of questions asked during the surgical visit and patient-reported Perceived Efficacy in Patient-Physician Interactions scale assessed after the surgical visit. Primary well-being outcomes included (1) the difference between patient's Measure Yourself Concerns and Well-being (MYCaW) scores reported after surgery and scores reported after the surgical visit and (2) treatment-associated regret at 6 to 8 weeks after surgery.

Results: Of 1319 patients eligible for participation, 223 were randomized to the QPL intervention and 223 to usual care. Among 446 patients, the mean (SD) age was 71.8 (7.1) years, and 249 (55.8%) were male. On intent-to-treat analysis, there was no significant difference between the QPL intervention and usual care for all patient-reported primary outcomes. The difference in MYCaW scores for family members was greater in usual care (effect estimate, 1.51; 95% CI, 0.28-2.74; P = .008). When the QPL intervention group was restricted to patients with clear evidence they reviewed the QPL, a nonsignificant increase in the effect size was observed for questions about options (odds ratio, 1.88; 95% CI, 0.81-4.35; P = .16), expectations (odds ratio, 1.59; 95% CI, 0.67-3.80; P = .29), and risks (odds ratio, 2.41; 95% CI, 1.04-5.59; P = .04) (nominal α = .01).

Conclusions And Relevance: The results of this study were null related to primary patient engagement and well-being outcomes. Changing patient-physician communication may be difficult without addressing clinician communication directly.

Trial Registration: ClinicalTrials.gov identifier: NCT02623335.
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http://dx.doi.org/10.1001/jamasurg.2019.3778DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6822097PMC
January 2020

Graft-Versus-Host Disease-Free Antitumoral Signature After Allogeneic Donor Lymphocyte Injection Identified by Proteomics and Systems Biology.

JCO Precis Oncol 2019 23;3. Epub 2019 May 23.

Indiana University School of Medicine, Indianapolis, IN.

Purpose: As a tumor immunotherapy, allogeneic hematopoietic cell transplantation with subsequent donor lymphocyte injection (DLI) aims to induce the graft-versus-tumor (GVT) effect but often also leads to acute graft-versus-host disease (GVHD). Plasma tests that can predict the likelihood of GVT without GVHD are still needed.

Patients And Methods: We first used an intact-protein analysis system to profile the plasma proteome post-DLI of patients who experienced GVT and acute GVHD for comparison with the proteome of patients who experienced GVT without GVHD in a training set. Our novel six-step systems biology analysis involved removing common proteins and GVHD-specific proteins, creating a protein-protein interaction network, calculating relevance and penalty scores, and visualizing candidate biomarkers in gene networks. We then performed a second proteomics experiment in a validation set of patients who experienced GVT without acute GVHD after DLI for comparison with the proteome of patients before DLI. We next combined the two experiments to define a biologically relevant signature of GVT without GVHD. An independent experiment with single-cell profiling in tumor antigen-activated T cells from a patient with post-hematopoietic cell transplantation relapse was performed.

Results: The approach provided a list of 46 proteins in the training set, and 30 proteins in the validation set were associated with GVT without GVHD. The combination of the two experiments defined a unique 61-protein signature of GVT without GVHD. Finally, the single-cell profiling in activated T cells found 43 of the 61 genes. Novel markers, such as RPL23, ILF2, CD58, and CRTAM, were identified and could be extended to other antitumoral responses.

Conclusion: Our multiomic analysis provides, to our knowledge, the first human plasma signature for GVT without GVHD. Risk stratification on the basis of this signature would allow for customized treatment plans.
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http://dx.doi.org/10.1200/po.18.00365DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6690359PMC
May 2019