INNV-26. NCI-CONNECT PROGRAM PROVIDES RESOURCES TO IMPROVE CARE FOR PEOPLE WITH RARE CENTRAL NERVOUS SYSTEM (CNS) TUMORS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi110-vi111
Author(s):  
Kristin Odom ◽  
Brittany Cordeiro ◽  
Kathleen Wall ◽  
Claudia Chambers ◽  
Kelly Mentges ◽  
...  
Keyword(s):  
Clinical Care ◽  
The United States ◽  
Primary Objective ◽  
Pineal Region ◽  
Cns Tumors ◽  
Direct Access ◽  
Specific Content ◽  
Pineal Region Tumors ◽  
Clinical Resource ◽  
Improve Patient

Abstract The National Cancer Institute Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) program focuses on improving approaches to care and treatment for 12 rare CNS tumors, each with < 2,000 diagnoses per year. To reach this rare population, the primary objective was to develop a website to share educational resources that provide patients direct access to clinical care and trials. METHODS: The NCI-CONNECT website uses the Drupal platform within NCI’s framework and the content is free to syndicate. A multidisciplinary team developed tumor-specific content in English and Spanish, clinical trial information, and survivorship resources using evidence-based sources. The Central Brain Tumor Registry of the United States provided statistics on incidence and prevalence of rare tumors. Population reach was calculated using Adobe Experience Cloud website analytics. NCI-CONNECT referrals and study participation data were collected prospectively. RESULTS: The English website launched in September 2018 and visits have increased 2,384%. The Spanish website launched in March 2020 and visits have increased 1,137%. From April 2020 to March 2021, top website page views by English page views / Spanish page views / people living with this disease include oligodendroglioma (43,859 / 8,241 / 11,757), ependymoma (31,579 / 12,684 / 13,294), meningioma (30,261 / 19,507 / 2,692), medulloblastoma (28,487 / 9,999 / 3,840), diffuse midline gliomas (23,064 / 3,851 / 6,033), and pineal region tumors (19,939 / 9,973 / 1,297). Referral rates and participation have accelerated – 45% of patients visiting the Neuro-Oncology Clinic at NIH have a rare CNS tumor and 409 patients enrolled in an NCI-CONNECT study. CONCLUSION: Patient-focused websites can provide guidance to those affected by rare cancers outside of in-person health care visits. The NCI-CONNECT website is an educational and clinical resource for patients and families affected by rare CNS tumors and was created to raise awareness and improve patient outcomes.

Essentials of Clinical Informatics

2019 ◽  
Keyword(s):  
Health Outcomes ◽  
Healthcare System ◽  
Financial Distress ◽  
Clinical Care ◽  
The United States ◽  
Clinical Informatics ◽  
Cultural Expectations ◽  
Critical Skills ◽  
Reducing Costs ◽  
Improve Patient

The American healthcare system is increasingly dependent on clinical informatics professionals to ensure that information technology contributes fully to measurably improve patient outcomes, enhance individual and organizational efficiency, and lower overall healthcare costs. Although the United States is the most expensive (per capita) healthcare system in the world, it ranks among the lowest in patient access and health outcomes. In the future, an aging population, complex comorbidities, family financial distress, changing cultural expectations, and unsustainable healthcare prices will necessitate a radically broader view of clinical care. Our technologies need to be optimally employed to promote health and support healthcare in a financially sustainable way. Clinical informatics is tasked with improving health outcomes while reducing costs. To realize these aims, clinical informatics must understand relationships among clinical care, workflows, technology, management, and public policy. This book provides an introduction to critical skills required of effective clinical informatics professionals.

Community Outreach Partnership Center (COPC)

2003 ◽  
Vol 1 (2) ◽  
pp. 44-51
Author(s):  
Kristine Brown ◽  
James Sturges
Keyword(s):  
Health Promotion ◽  
Los Angeles ◽  
Mexican Immigrants ◽  
Community Outreach ◽  
Well Being ◽  
Integrated Services ◽  
The United States ◽  
Primary Objective ◽  
Health Promotion Program ◽  
Federal Grant

With the continued influx of Mexican immigrants to the United States, especially to Southern California, health concerns and needs have increased among this population over the last several years. California State Polytechnic University, Pomona (Cal Poly Pomona) obtained a federal grant that provided resources to establish the Community Outreach Partnership Center (COPC). COPC consists of comprehensive efforts to improve the overall well-being of the Angela Chanslor area within the City of Pomona in East Los Angeles. Focus areas of the project include 1) Education and Integrated Services, 2) Community Planning and Capacity Building for Neighborhood Revitalization and Safety, and 3) Job Development and Training. The focus of this paper is health promotion activities within Education and Integrated Services. The primary objective of this portion of the program was to provide residents with physical examinations and health screenings, health education, and medical and social service referrals. Topics discussed are the target community, general overview of COPC, Family Services Information and Referral Program (i.e. health promotion program within Education and Integrated Services), program impact and results, and suggestions for continued implementation and future efforts. / Con la influencia continua de inmigrantes Mexicanos a los Estados Unidos, especialmente al sur de California, ciertas necesidades con respecto a la salud han incrementado en esta poblacion en los ultimos anos. California State Polytechnic University, Pomona (Cal Poly Pomona). Obtuvo ayuda Federal para establecer El Community Outreach Partnership Center (COPC). El centro COPC consiste de esfuerzos conprensivos para mejorar el bienestar del area Angela Chanslor que esta ubicado en la Ciudad de Pomona en la parte Este de Los Angeles. Las partes enfocadas del proyecto incluyen, 1) Educacion y servicios Integrados, 2) Plan para la Comunidad y un Edificio de Capacitacion para la comunidad que dara revitalizacion y seguridad, 3) Y habrira trabajos y entrenamientos. El enfoque de este proyecto es de actividades en Promocion de Salud aliadas con educacion y Servicios Integrados. El objetivo principal de esta porcion del programa era de proveer a los residentes con examinaciones fisicas, educacion para la salud, y eran referidas a servicios medicos y sociales. Los topicos que son tratados son: La comunidad que sera ayudada, El enfoque general de COPC, informacion del programa para referir a servicios familiares, el impacto del programa y resultados, y sugerencias para implementar futuros esfuerzos.

67 The Evolution of A Frailty Service

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
C Abbott ◽  
K Bishop ◽  
F Hill ◽  
C Finlow ◽  
R Maraj
Keyword(s):  
Cost Effectiveness ◽  
Patient Outcomes ◽  
Local Population ◽  
Management Team ◽  
Pdsa Cycle ◽  
North Wales ◽  
Number Of Patients ◽  
Constant State ◽  
Clinical Resource ◽  
Improve Patient

Abstract Introduction In September 2017 our frailty service was started within our medium sized DGH in North Wales. Working with our management team we secured a significant clinical resource including: We describe how resources, setting and staffing develop over a 2 year period in order to create a service which meets the needs of the local population. Method The service has been in a constant state of development since it has been in operation, utilising a PDSA model with regular meetings of clinical and managerial staff to analyse performance. Results With each new PDSA cycle the amount of patients reviewed has increased. With the move to AMU we increased the monthly number of patients reviewed from 29 to 172 patients reviewed, 97 of which were discharged directly from the unit. Conclusion Using QI methodology our Frailty Service has improved dramatically since its inception. We will continue to analyse how we work to improve patient outcomes and cost effectiveness.

scholarly journals Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade

2021 ◽  
pp. 1-3
Author(s):  
Erica Sood ◽  
Jeffrey P Jacobs ◽  
Bradley S Marino
Keyword(s):  
Health Disparities ◽  
Outcomes Research ◽  
Research Agenda ◽  
Clinical Care ◽  
Neurodevelopmental Outcome ◽  
Psychosocial Outcomes ◽  
The United States ◽  
Future Research ◽  
Neurodevelopmental Outcomes ◽  
Working Groups

Abstract Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD and complicate the transition to independent adulthood. Risk for neurodevelopmental and psychosocial impairments is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, and social factors, requiring a multi-pronged approach to neuroprotection and intervention. To ensure future research can ultimately reduce the burden of CHD for individuals, families, and society, the most pressing issues in cardiac neurodevelopment requiring scientific investigation must be identified. Through funding from an R13 Grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, the Cardiac Neurodevelopmental Outcome Collaborative convened a two-day meeting of international experts in cardiac neurodevelopmental and psychosocial research, clinical care, and health disparities, including patient and family stakeholders, to define the cardiac neurodevelopmental and psychosocial outcomes research agenda for the next decade. Seven multidisciplinary working groups were formed to address key domains crucial to the advancement of cardiac neurodevelopmental and psychosocial outcomes research: 1) Foetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychological Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Parent Mental Health and Family Functioning, 6) Neurodevelopmental Education, Outreach and Advocacy, and 7) Health Disparities and Neurodevelopmental Outcomes. Working groups identified significant gaps in knowledge and critical questions that must be answered to further knowledge, policy, care, and outcomes. The development of a research agenda in cardiac neurodevelopmental and psychosocial outcomes is critical for informing collaborative initiatives and allocation of funding for research to scientific inquiries of highest value to key stakeholders.

scholarly journals Multicenter point prevalence evaluation of the utilization and safety of drug therapies for COVID-19 at the onset of the pandemic timeline in the United States

2021 ◽  
Author(s):  
Nathaniel J Rhodes ◽  
Atheer Dairem ◽  
William J Moore ◽  
Anooj Shah ◽  
Michael J Postelnick ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Drug Therapy ◽  
Supportive Care ◽  
The United States ◽  
Primary Objective ◽  
Point Prevalence ◽  
Medical Centers ◽  
Academic Medical ◽  
History Of ◽  
Secondary Objective

Abstract Disclaimer In an effort to expedite the publication of articles related to the COVID-19 pandemic, AJHP is posting these manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time. Purpose There are currently no FDA-approved medications for the treatment of coronavirus disease 2019 (COVID-19). At the onset of the pandemic, off-label medication use was supported by limited or no clinical data. We sought to characterize experimental COVID-19 therapies and identify safety signals during this period. Methods We conducted a non-interventional, multicenter, point prevalence study of patients hospitalized with suspected/confirmed COVID-19. Clinical and treatment characteristics within a 24-hour window were evaluated in a random sample of up to 30 patients per site. The primary objective was to describe COVID-19–targeted therapies. The secondary objective was to describe adverse drug reactions (ADRs). Results A total of 352 patients treated for COVID-19 at 15 US hospitals From April 18 to May 8, 2020, were included in the study. Most patients were treated at academic medical centers (53.4%) or community hospitals (42.6%). Sixty-seven patients (19%) were receiving drug therapy in addition to supportive care. Drug therapies used included hydroxychloroquine (69%), remdesivir (10%), and interleukin-6 antagonists (9%). Five patients (7.5%) were receiving combination therapy. The rate of use of COVID-19–directed drug therapy was higher in patients with vs patients without a history of asthma (14.9% vs 7%, P = 0.037) and in patients enrolled in clinical trials (26.9% vs 3.2%, P < 0.001). Among those receiving drug therapy, 8 patients (12%) experienced an ADR, and ADRs were recognized at a higher rate in patients enrolled in clinical trials (62.5% vs 22%; odds ratio, 5.9; P = 0.028). Conclusion While we observed high rates of supportive care for patients with COVID-19, we also found that ADRs were common among patients receiving drug therapy, including those enrolled in clinical trials. Comprehensive systems are needed to identify and mitigate ADRs associated with experimental COVID-19 treatments.

scholarly journals Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States

2021 ◽  
pp. bmjsrh-2020-200966
Author(s):  
Heidi Moseson ◽  
Laura Fix ◽  
Caitlin Gerdts ◽  
Sachiko Ragosta ◽  
Jen Hastings ◽  
...  
Keyword(s):  
United States ◽  
Clinical Supervision ◽  
Online Survey ◽  
Clinical Care ◽  
Insurance Coverage ◽  
Health Insurance Coverage ◽  
The United States ◽  
Physical Trauma ◽  
Abortion Care ◽  
And Gender

BackgroundTransgender, nonbinary and gender-expansive (TGE) people face barriers to abortion care and may consider abortion without clinical supervision.MethodsIn 2019, we recruited participants for an online survey about sexual and reproductive health. Eligible participants were TGE people assigned female or intersex at birth, 18 years and older, from across the United States, and recruited through The PRIDE Study or via online and in-person postings.ResultsOf 1694 TGE participants, 76 people (36% of those ever pregnant) reported considering trying to end a pregnancy on their own without clinical supervision, and a subset of these (n=40; 19% of those ever pregnant) reported attempting to do so. Methods fell into four broad categories: herbs (n=15, 38%), physical trauma (n=10, 25%), vitamin C (n=8, 20%) and substance use (n=7, 18%). Reasons given for abortion without clinical supervision ranged from perceived efficiency and desire for privacy, to structural issues including a lack of health insurance coverage, legal restrictions, denials of or mistreatment within clinical care, and cost.ConclusionsThese data highlight a high proportion of sampled TGE people who have attempted abortion without clinical supervision. This could reflect formidable barriers to facility-based abortion care as well as a strong desire for privacy and autonomy in the abortion process. Efforts are needed to connect TGE people with information on safe and effective methods of self-managed abortion and to dismantle barriers to clinical abortion care so that TGE people may freely choose a safe, effective abortion in either setting.

scholarly journals 1655. Extrapulmonary Tuberculosis in a Large Healthcare System

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S816-S816
Author(s):  
Travis Denmeade ◽  
William Smith ◽  
Banks Kooken ◽  
Michael Leonard
Keyword(s):  
Health System ◽  
Healthcare System ◽  
Extrapulmonary Tuberculosis ◽  
Retrospective Chart Review ◽  
The United States ◽  
Primary Objective ◽  
Hiv Positive ◽  
Hiv Status ◽  
Southeastern Us ◽  
Race Ethnicity

Abstract Background The US has seen a rise in the proportion of patients with extrapulmonary tuberculosis (TB) even though the yearly incidence of new TB cases has been in decline. The purpose of this study was to analyze incidence of extrapulmonary TB at Atrium Health, a large non-profit health system in the Southeastern US. Methods Retrospective chart review of 94 adult patients with culture confirmed extrapulmonary TB between 2008-2019. Individuals younger than 18 years were excluded from analysis. The primary objective was to examine incidence of extrapulmonary TB and compare it to that reported in the literature. Secondary objectives included determination of sites of extrapulmonary disease and associated patient characteristics including HIV status, race, ethnicity, and birthplace. Results 237 patients were identified as having confirmed TB infection from 2008-2019 in a retrospective analysis within the Atrium Health System. 94 (40%) were found to have extrapulmonary disease; 42 (45%) with concomitant pulmonary disease. The patients were 55% male, 40% African American, 21% Hispanic or Latino, and 51% US-born. Median age was 44 years (range 20-62). The most common sites of extrapulmonary TB were lymphatic (35%), pleural (24%), GI/Peritoneal (12%), CNS (10%), and Bone/Joint (10%). Lymphatic involvement was 40% cervical, 19% intrathoracic, and 16% axillary. 66% of skeletal disease was vertebral. Other sites included GU, pericardial, skin, and disseminated disease (5%). 37% were HIV positive, 18% with unknown HIV status as they were never tested. Information regarding patient’s race, ethnicity, and birthplace were unknown for 2 patients. The percentage of extrapulmonary cases were 29% in 2008, 39% in 2012, 38% in 2016, and 49% in 2019. Conclusion Lymphatic and pleural involvement were the most common extrapulmonary sites. Of those tested, 37% were HIV positive but there was a significant portion never tested showing a need for increased testing. The proportion of extrapulmonary TB cases since 2008 is higher at 40% compared to the 31% reported in the United States. There has been a rise in the proportion of extrapulmonary TB within our healthcare system and deserves further analysis. Disclosures All Authors: No reported disclosures

Psychology Staffing at Cancer Centers: Data From National Comprehensive Cancer Network Member Institutions

2020 ◽  
Vol 16 (11) ◽  
pp. e1343-e1354
Author(s):  
Laura Melton ◽  
Diana Krause ◽  
Jessica Sugalski
Keyword(s):  
National Comprehensive Cancer Network ◽  
Patient Care ◽  
Clinical Care ◽  
The United States ◽  
Direct Patient Care ◽  
Cancer Center ◽  
Network Member ◽  
Full Time ◽  
Cancer Centers ◽  
Cancer Network

PURPOSE: The field of psycho-oncology is relatively undeveloped, with little information existing regarding the use of psychologists at cancer centers. Comprising 30 leading cancer centers across the United States, the National Comprehensive Cancer Network (NCCN) set out to understand the trends in its Member Institutions. METHODS: The NCCN Best Practices Committee surveyed NCCN Member Institutions regarding their use of psychologists. The survey was administered electronically in the spring/summer of 2017. RESULTS: The survey was completed by 18 cancer centers. Across institutions, 94% have psychologists appointed to provide direct care to their cancer center patients. The number of licensed psychologist full-time equivalents (FTEs) on staff who provide direct patient care ranged from < 1.0 FTE (17%) to 17.0-17.9 FTEs (6%). Regarding psychologist appointments, 41% have both faculty and staff appointments, 41% have all faculty appointments, and 18% have all staff appointments. Forty-three percent of institutions indicated that some licensed psychologists at their centers (ranging from 1%-65%) do not provide any direct clinical care, and 57% indicated that all licensed psychologist on staff devote some amount of time to direct clinical care. The percent of clinical care time that is spent on direct clinical care ranged from 15%-90%. CONCLUSION: There is great variability in psychology staffing, academic appointments, and the amount of direct patient care provided by on-staff psychologists at cancer centers.

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