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Using modeling to inform patient-centered care choices at the end of life

Hajizadeh, Negin; Crothers, Kristina; Braithwaite, R Scott
Aim: Advance directives are often under-informed due to a lack of disease-specific prognostic information. Without well-informed advance directives patients may receive default care that is incongruent with their preferences. We aimed to further inform advance care planning in patients with severe chronic obstructive pulmonary disease by estimating outcomes with alternative advance directives. Methods: We designed a Markov microsimulation model estimating outcomes for patients choosing between the Full Code advance directive (permitting invasive mechanical ventilation), and the Do Not Intubate directive (only permitting noninvasive ventilation). Results: Our model estimates Full Code patients have marginally increased one-year survival after admission for severe respiratory failure, but are more likely to be residing in a nursing home and have frequent rehospitalizations for respiratory failure. Conclusion: Patients with severe chronic obstructive pulmonary disease may consider these potential tradeoffs between survival, rehospitalizations and institutionalization when making informed advance care plans and end-of-life decisions. We highlight outcomes research needs for variables most influential to the model's outcomes, including the risk of complications of invasive mechanical ventilation and failing noninvasive mechanical ventilation.
PMCID:3914667
PMID: 24236746
ISSN: 2042-6305
CID: 641612

Perceived public stigma and stigmatization in explaining lifetime illicit drug use among emerging adults

Palamar, Joseph J.; Halkitis, Perry N.; Kiang, Mathew V.
ISI:000326043600010
ISSN: 1606-6359
CID: 627562

Using the delphi and snow card techniques to build consensus among diverse community and academic stakeholders

Rideout, Catlin; Gil, Rosa; Browne, Ruth; Calhoon, Claudia; Rey, Mariano; Gourevitch, Marc; Trinh-Shevrin, Chau
Background: The New York University- New York City Health and Hospitals Corporation (NYU-HHC) Clinical and Translational Science Institute (CTSI) used a community-based participatory research (CBPR) and consensus-building approach among its community advisory board (CAB) and steering committee (SC) members to formulate research priorities to foster shared research collaborations. Methods: The Delphi technique is a methodology used to generate consensus from diverse perspectives and organizational agendas through a multi-method, iterative approach to collecting data. A series of on-line surveys was conducted with CAB members to identify health and research priorities from the community perspective. Subsequently, CAB and SC members were brought together and the snow card approach was utilized to narrow to two priority areas for shared research collaborations. Results: Cardiovascular disease (CVD)/obesity and mental health were identified as health disparity areas for shared research collaborations within a social determinants framework. In response, two workgroups were formed with leadership provided by three co-chairs representing the three constituents of the NYU-HHC CTSI: NYU faculty, HHC providers, and community leaders Conclusions: The Delphi approach fostered ownership and engagement with community partners because it was an iterative process that required stakeholders' input into decision making. The snow card technique allowed for organizing of a large number of discrete ideas. Results have helped to inform the overall CTSI research agenda by defining action steps, and setting an organizing framework to tackle two health disparity areas. The process helped ensure that NYUHHC CTSI research and community engagement strategies are congruent with community priorities.
PMCID:4154599
PMID: 24056515
ISSN: 1557-0541
CID: 620222

Melanoma risk loci as determinants of melanoma recurrence and survival

Rendleman, Justin; Shang, Shulian; Dominianni, Christine; Shields, Jerry F; Scanlon, Patrick; Adaniel, Christina; Desrichard, Alexis; Ma, Michelle; Shapiro, Richard; Berman, Russell; Pavlick, Anna; Polsky, David; Shao, Yongzhao; Osman, Iman; Kirchhoff, Tomas
BACKGROUND: Steadily high melanoma mortality rates urge for the availability of novel biomarkers with a more personalized ability to predict melanoma clinical outcomes. Germline risk variants are promising candidates for this purpose; however, their prognostic potential in melanoma has never been systematically tested. METHODS: We examined the effect of 108 melanoma susceptibility single nucleotide polymorphisms (SNPs), associated in recent GWAS with melanoma and melanoma-related phenotypes, on recurrence-free survival (RFS) and overall survival (OS), in 891 prospectively accrued melanoma patients. Cox proportional hazards models (Cox PH) were used to test the associations between 108 melanoma risk SNPs and RFS and OS adjusted by age at diagnosis, gender, tumor stage, histological subtype and other primary tumor characteristics. RESULTS: We identified significant associations for rs7538876 (RCC2) with RFS (HR = 1.48, 95% CI = 1.20-1.83, p = 0.0005) and rs9960018 (DLGAP1) with both RFS and OS (HR = 1.43, 95% CI = 1.07-1.91, p = 0.01, HR = 1.52, 95% CI = 1.09-2.12, p = 0.01, respectively) using multivariable Cox PH models. In addition, we developed a logistic regression model that incorporates rs7538876, rs9960018, primary tumor histological type and stage at diagnosis that has an improved discriminatory ability to classify 3-year recurrence (AUC = 82%) compared to histological type and stage alone (AUC = 78%). CONCLUSIONS: We identified associations between melanoma risk variants and melanoma outcomes. The significant associations observed for rs7538876 and rs9960018 suggest a biological implication of these loci in melanoma progression. The observed predictive patterns of associated variants with clinical end-points suggest for the first time the potential for utilization of genetic risk markers in melanoma prognostication.
PMCID:4228352
PMID: 24188633
ISSN: 1479-5876
CID: 617512

School contexts as social determinants of child health: current practices and implications for future public health practice

Huang, Keng-Yen; Cheng, Sabrina; Theise, Rachelle
PMCID:3789608
PMID: 24179275
ISSN: 0033-3549
CID: 614362

Unmet Legal Needs of Emergency Department Patients: A Novel Opportunity for Medical Legal Partnerships [Meeting Abstract]

Testa, P.; Williams, M.; Doran, K.; El Bakhar, A.; Williams, N.; Retkin, R.
ISI:000325506500060
ISSN: 0196-0644
CID: 612102

Baseline Retinal Nerve Fiber Layer Thickness and Macular Volume Quantified by OCT in the North American Phase 3 Fingolimod Trial for Relapsing-Remitting Multiple Sclerosis

Winges, Kimberly M; Werner, John S; Harvey, Danielle J; Cello, Kimberly E; Durbin, Mary K; Balcer, Laura J; Calabresi, Peter A; Keltner, John L
BACKGROUND:: Patients with multiple sclerosis (MS) demonstrate thinning of peripapillary retinal nerve fiber layer (RNFL) and decreased macular volume as measured by optical coherence tomography (OCT). To our knowledge, there are no previous reports from a large MS OCT database with strict quality control measures that quantitate RNFL and macula in patients with relapsing-remitting multiple sclerosis. METHODS:: The University of California Davis OCT Reading Center gathered OCT data at baseline as part of the North American phase 3 trial of fingolimod (Gilenya). Average RNFL thickness (RNFLT) and macular volume (TMV) were measured using time domain OCT (TD-OCT). RNFL quadrants, clock hours, and macular subfields were included. With strict quality control and accounting for signal strength differences, scans were categorized as "reduced" or "not reduced" for each field, based on being less than 5th percentile for age-matched controls derived from the normative database in the scanner software. Patients were deemed "abnormal" if at least 1 eye had reduced values for a given parameter. Patients with abnormalities in corresponding RNFL and macular subfields were compared by cross-tabulation. RESULTS:: The TD-OCT data were prospectively collected from 939 of the 1,083 trial patients, 712 of whom met all final quality and data inclusion criteria. Of the final cohort, 242 (34.0%) demonstrated reduced (less than 5th percentile) average RNFLT in at least 1 eye. One hundred seventy-eight (25.0%) patients had reduced TMV. One hundred twenty-eight (18.0%) demonstrated both reduced TMV and RNFLT in the same eye, whereas 42 (5.8%) had reduced TMV and RNFLT in both eyes. Of the 242 patients with reduced average RNFL thickness, 128 (52.9%) also had reduced TMV. Fifty patients had reduced TMV in the absence of reduced RNFLT in at least 1 eye, a cohort prevalence of 7.0%. Quadrant and subfield analysis showed a predominance of temporal and inferior RNFL thinning, with inferior macular thinning corresponding best to RNFL thinning. CONCLUSION:: RNFL and macular thinning/volume loss is common at baseline in relapsing-remitting multiple sclerosis, as measured by TD-OCT. When the RNFL is thin, the macular volume is reduced in more than half of the patients. There is a population of reduced TMV without any reduction in RNFLT. Documenting the prevalence and distribution of these structural abnormalities supports recent reports and suggests new retinal areas to probe for functional vision changes in MS.
PMCID:3959779
PMID: 24051419
ISSN: 1070-8022
CID: 612942

Sports-related concussion: Anonymous survey of a collegiate cohort

Torres, Daniel M; Galetta, Kristin M; Phillips, H Westley; Dziemianowicz, E Mark S; Wilson, James A; Dorman, Emily S; Laudano, Eric; Galetta, Steven L; Balcer, Laura J
Studies suggest that a lack of standardized knowledge may lead to underreporting and undertreatment of sports-related concussion. However, there has been little work done to establish how this knowledge may affect athletes' behaviors toward reporting their concussions and removing themselves from play. We conducted an anonymous online survey to assess athletes' knowledge of signs and symptoms of concussion, and also sought to estimate the potential frequency of underreporting in a collegiate athlete cohort. Among 262 athletes who responded to the survey, 43% of those with a history of concussion reported that they had knowingly hidden symptoms of a concussion to stay in a game, and 22% of athletes overall indicated that they would be unlikely or very unlikely to report concussion symptoms to a coach or athletic trainer in the future. These data suggest that there may be a substantial degree of underreporting of concussion among collegiate athletes, despite most acknowledging that they have been formally educated about the risks of concussion.
PMCID:3787116
PMID: 24195017
ISSN: 2163-0402
CID: 612932

Barriers to utilization of pre-hospital emergency medical services among residents in Libreville, Gabon: A qualitative study

Bosson, N; Redlener, M A; Foltin, G L; Raven, M C; Foran, M P; Wall, S P
Introduction In 2002, the West-African nation of Gabon established an emergency medical system (EMS), Service d'Aide Medicale Urgente (SAMU), in Libreville, yet few people access it. Our objective was to describe Libreville residents' knowledge and attitudes toward the SAMU in an effort to understand why this service is underutilized. Methods Qualitative interviews consisting of nine open-ended questions were conducted on a convenience sample of twenty patients, three visitors and two patient/visitor dyads at the Jeanne Ebori Hospital Emergency Centre in October 2009. Eligible subjects arrived in vehicles other than the SAMU and were ill enough to require hospital admission. Exclusion criteria were: under 21 years old, unable to speak French, or medically unstable. A bilingual team member audio-recorded the interviews in French and transcribed them into English. Investigators organized text into codes, then into themes and theoretical constructs. Intercoder agreement was excellent. Data were collected until theoretical saturation was achieved. Results Analysis of data revealed no difference in response between patients and visitors. People underused SAMU because of financial costs, lack of awareness of the program, use of traditional modes of transportation, infrastructure flaws, perceived response times and other misconceptions. Conclusion We identified remediable barriers to EMS (SAMU) access in Libreville, Gabon: lack of awareness, misperceptions, established alternatives, and cost. Interventions and future investigations designed to increase EMS utilization in Gabon should target these four areas. 2013 Production and hosting by Elsevier on behalf of African Federation for Emergency Medicine
EMBASE:2013632829
ISSN: 2211-419x
CID: 602912

Policing online professionalism: are we too alarmist?

Lerner, Barron H
PMID: 23979294
ISSN: 2168-6106
CID: 598412