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Proceedings of the New York University School of Medicine Reproductive Ethics Conference: Challenges and Solutions [Letter]

Sampson, Amani; Sutter, Megan; Caplan, Arthur L; Keefe, David L; Quinn, Gwendolyn P
PMID: 31346937
ISSN: 1573-7330
CID: 3988242

Protocol for the development and acceptability of a fertility-related decision aid for young women with breast cancer in Portugal

Gonçalves, Vânia; Travado, Luzia; Ferreira, Pedro Lopes; Quinn, Gwendolyn
INTRODUCTION/BACKGROUND:Young patients with breast cancer may face impaired fertility due to cancer treatments, which often leads to complex fertility decisions. To aid fertility decision-making, it is crucial that women have access to high-quality information; however, their fertility information needs are often unmet. Decision aids (DAs) are educational materials to assist with decision-making, by addressing individual values and preferences. In oncofertility, DAs may constitute a valuable resource to help patients obtain information and make better informed decisions. This paper reports on the protocol of the development and transcreation of a fertility-related DA booklet to support young Portuguese patients with breast cancer, originally developed and validated for an Australian audience. METHODS AND ANALYSIS/UNASSIGNED:Recent literature on clinical guidelines will be reviewed. A summary of these guidelines will be created and will inform the first round of DAs revisions. A forward translation process will translate the DA from Australian English to Portuguese. A multidisciplinary Portuguese experts panel will revise and give feedback on the scientific and cultural aspects of the DA content for Portuguese audience. Next, a backward translation process will assess content equivalence between the original and the final adapted version. Finally, Learner Verification (LV) will be used in a qualitative study of young patients with breast cancer and their partners. Two focus groups with 6-10 participants each will be conducted with: (1) recently diagnosed young patients with breast cancer; (2) breast cancer survivors and (3) their partners. Results from the DA acceptability assessment will inform its final version. Data will be analysed using content analysis and constant comparison method to identify key themes/textual units related to LV. ETHICS AND DISSEMINATION/UNASSIGNED:Ethical approval was granted by the Portuguese Institute of Oncology Porto. Results will be disseminated through peer-reviewed journals and presented at scientific meetings for academic and health professionals audiences.
PMID: 31345986
ISSN: 2044-6055
CID: 3988202

Banking the Future: Adolescent Capacity to Consent to Biobank Research

McGregor, Kyle A; Ott, Mary A
Adolescents are an important population to represent in biobanks. Inclusion of biospecimens from adolescents advances our understanding of the long-term consequences of pediatric disease and allows the discovery of methods to prevent adult diseases during childhood. Consent for biobanking is complex, especially when considering adolescent participation, as it brings up issues that are not present with general clinical research. The development and successful implementation of an adolescent capacity assessment tool applied specifically to biobanking can potentially provide researchers and clinicians with contextualized information on participants' understanding, appreciation, reasoning, and voluntary choice for biobanks. This tool would enhance current studies looking at the role of shared decision-making in biobanking, as well as provide a formal measurement when considering decisions around pediatric and adolescent biobanking participation. This study adapted the MacCAT-CR for use with a hypothetical adolescent biobank study and examines predictors of MacCAT-CR scores on healthy and chronically ill adolescents.
PMID: 31336038
ISSN: 2578-2363
CID: 3988052

Adverse drug-related effects among electronic dance music party attendees

Palamar, Joseph J; Acosta, Patricia; Le, Austin; Cleland, Charles M; Nelson, Lewis S
BACKGROUND:Drug use is prevalent among electronic dance music (EDM) party attendees, but research is needed to determine the extent of adverse drug-related outcomes in this population in order to better inform prevention and harm reduction efforts. METHOD/METHODS:1029 adults were surveyed entering EDM parties in New York City in 2018. Those reporting past-year use of a drug were asked if they experienced a harmful or very unpleasant effect after use in which they were concerned about their immediate safety. They were also asked about co-use of other drugs and whether they sought help. RESULTS:We estimate that a third (33.5%) of EDM party attendees have experienced a drug-related adverse effect in the past year. Two-thirds (67.8%) of adverse effects involved use of alcohol. Relative to use, adverse effects most commonly resulted from use of opioids (e.g., prescription opioid misuse, 41.2%) or alcohol (33.9%). Among those reporting an adverse effect, concomitant use of other drugs was common, particularly among users of LSD (56.5%), ketamine (56.3%), cocaine (55.7%), and ecstasy/MDMA/Molly (47.7%). Adverse effects resulting from synthetic cathinone ("bath salt") use were most likely to result in a hospital visit (57.1%). CONCLUSION/CONCLUSIONS:Adverse effects from drug use are common among those in the EDM party scene and polydrug use appears to be a common risk factor. More research is needed, however, to determine the extent of event-specific adverse outcomes. Results can inform prevention and harm reduction efforts in this population.
PMID: 31349134
ISSN: 1873-4758
CID: 3988402

Strategies for Effective Stakeholder Engagement in Strengthening Referral Networks for Management of Hypertension Across Health Systems in Kenya

Akwanalo, Constantine; Njuguna, Benson; Mercer, Tim; Pastakia, Sonak D; Mwangi, Ann; Dick, Jonathan; Dickhaus, Julia; Andesia, Josephine; Bloomfield, Gerald S; Valente, Thomas; Kibachio, Joseph; Pillsbury, Max; Shravani, Pathak; Thakaar, Aarti; Vedanthan, Rajesh; Kamano, Jemima; Naanyu, Violet
BACKGROUND:Ineffective referral networks in low- and middle-income countries hinders access to evidence-based therapies by hypertensive patients, leading to high cardiovascular mortality and morbidity. The STRENGTHS (Strengthening Referral Networks for Management of Hypertension Across Health Systems) study evaluates strategies to improve referral processes utilizing the International Association of Public Participation framework to engage stakeholders. OBJECTIVES/OBJECTIVE:This study sought to identify and engage key stakeholders involved in referral of patients in the Ministry of Health, western Kenya. METHODS:Key stakeholders involved in policy formulation, provision, or consumption of public health care service were mapped out and contacted by phone, letters, and emissaries to schedule meetings, explain research objectives, and obtain feedback. RESULTS:Key stakeholders identified were the Ministry of Health, the Academic Model Providing Access to Healthcare, health professionals, communities and their leadership, and patients. Engaging them resulted in permission to contact research in their areas of jurisdiction and enabled collaboration in updating care protocols with emphasis on timely and appropriate referrals. CONCLUSIONS:Early stakeholder identification and engagement using the International Association of Public Participation model eased explanation of research objectives, building consensus, and shaping the interventions to improve the referral process.
PMID: 31324372
ISSN: 2211-8179
CID: 3978162

Impact of a tobacco cessation intervention on adherence to tobacco use treatment guidelines among village health workers in Vietnam

Nguyen, Nam; Nguyen, Trang; Truong, Van; Dang, Kim; Siman, Nina; Shelley, Donna
Community health workers (in Vietnam referred to as village health workers) have the potential to play a key role in expanding access to evidence-based tobacco use treatment. We conducted a cluster randomized controlled trial in community health centers in Vietnam that compared the effect of provider advice and cessation assistance (i.e. brief counseling and patient education materials) (BC) vs. BC + three sessions of in-person counseling delivered by a village health worker (BC+R) on providers' and village health workers' adherence to tobacco use treatment guidelines. All village health workers and health care providers received training. This paper presents data on the effect of the intervention on village health workers' adherence to tobacco use treatment guidelines, including asking about tobacco use, advising smokers to quit, offering assistance and their attitude, norms, and self-efficacy related to tobacco use treatment. We examined changes in adherence to tobacco use treatment guidelines before and 12 months after the intervention among 89 village health workers working in the 13 community health centers enrolled in the BC+R study condition. Village health workers' adherence to tobacco use treatment guidelines increased significantly. Village health workers were more likely to ask about tobacco use (3.4% at baseline, 32.6% at 12 months), offer advice to quit (4.5% to 48.3%) and offer assistance (1.1% to 38.2%). Perceived barriers to treating tobacco use decreased significantly. Self-efficacy and attitudes towards treating tobacco use improved significantly. Increased adherence to tobacco use treatment guidelines was associated with positive attitudes towards their role in delivering tobacco use treatment and increasing awareness of the community health center smoke-free policy. The findings suggest that, with training and support systems, village health workers can extend their role to include smoking cessation services. This workforce could represent a sustainable resource for supporting smokers who wish to quit.
PMID: 31319786
ISSN: 1757-9767
CID: 3978042

The Kathmandu Declaration on Global CVD/Hypertension Research and Implementation Science: A Framework to Advance Implementation Research for Cardiovascular and Other Noncommunicable Diseases in Low- and Middle-Income Countries

Aifah, Angela; Iwelunmor, Juliet; Akwanalo, Constantine; Allison, Jeroan; Amberbir, Alemayehu; Asante, Kwaku P; Baumann, Ana; Brown, Angela; Butler, Mark; Dalton, Milena; Davila-Roman, Victor; Fitzpatrick, Annette L; Fort, Meredith; Goldberg, Robert; Gondwe, Austrida; Ha, Duc; He, Jiang; Hosseinipour, Mina; Irazola, Vilma; Kamano, Jemima; Karengera, Stephen; Karmacharya, Biraj M; Koju, Rajendra; Maharjan, Rashmi; Mohan, Sailesh; Mutabazi, Vincent; Mutimura, Eugene; Muula, Adamson; Narayan, K M V; Nguyen, Hoa; Njuguna, Benson; Nyirenda, Moffat; Ogedegbe, Gbenga; van Oosterhout, Joep; Onakomaiya, Deborah; Patel, Shivani; Paniagua-Ávila, Alejandra; Ramirez-Zea, Manuel; Plange-Rhule, Jacob; Roche, Dina; Shrestha, Archana; Sharma, Hanspria; Tandon, Nikhil; Thu-Cuc, Nguyen; Vaidya, Abhinav; Vedanthan, Rajesh; Weber, Mary Beth
PMID: 31324363
ISSN: 2211-8179
CID: 3978132

Immunomodulatory germline variation associated with the development of multiple primary melanoma (MPM)

Ferguson, Robert; Archambault, Alexi; Simpson, Danny; Morales, Leah; Chat, Vylyny; Kazlow, Esther; Lax, Rebecca; Yoon, Garrett; Moran, Una; Shapiro, Richard; Pavlick, Anna; Polsky, David; Osman, Iman; Kirchhoff, Tomas
Multiple primary melanoma (MPM) has been associated with a higher 10-year mortality risk compared to patients with single primary melanoma (SPM). Given that 3-8% of patients with SPM develop additional primary melanomas, new markers predictive of MPM risk are needed. Based on the evidence that the immune system may regulate melanoma progression, we explored whether germline genetic variants controlling the expression of 41 immunomodulatory genes modulate the risk of MPM compared to patients with SPM or healthy controls. By genotyping these 41 variants in 977 melanoma patients, we found that rs2071304, linked to the expression of SPI1, was strongly associated with MPM risk reduction (OR = 0.60; 95% CI = 0.45-0.81; p = 0.0007) when compared to patients with SPM. Furthermore, we showed that rs6695772, a variant affecting expression of BATF3, is also associated with MPM-specific survival (HR = 3.42; 95% CI = 1.57-7.42; p = 0.0019). These findings provide evidence that the genetic variation in immunomodulatory pathways may contribute to the development of secondary primary melanomas and also associates with MPM survival. The study suggests that inherited host immunity may play an important role in MPM development.
PMID: 31308438
ISSN: 2045-2322
CID: 3977742

Hypertension management in rural western Kenya: a needs-based health workforce estimation model

Vedanthan, Rajesh; Lee, Danielle J; Kamano, Jemima H; Herasme, Omarys I; Kiptoo, Peninah; Tulienge, Deborah; Kimaiyo, Sylvester; Balasubramanian, Hari; Fuster, Valentin
BACKGROUND:Elevated blood pressure is the leading risk for mortality in the world. Task redistribution has been shown to be efficacious for hypertension management in low- and middle-income countries. However, the workforce requirements for such a task redistribution strategy are largely unknown. Therefore, we developed a needs-based workforce estimation model for hypertension management in western Kenya, using need and capacity as inputs. METHODS:Key informant interviews, focus group discussions, a Delphi exercise, and time-motion studies were conducted among administrative leadership, clinicians, patients, community leaders, and experts in hypertension management. These results were triangulated to generate the best estimates for the inputs into the health workforce model. The local hypertension clinical protocol was used to derive a schedule of encounters with different levels of clinician and health facility staff. A Microsoft Excel-based spreadsheet was developed to enter the inputs and generate the full-time equivalent workforce requirement estimates over 3 years. RESULTS:Two different scenarios were modeled: (1) "ramp-up" (increasing growth of patients each year) and (2) "steady state" (constant rate of patient enrollment each month). The ramp-up scenario estimated cumulative enrollment of 7000 patients by year 3, and an average clinical encounter time of 8.9 min, yielding nurse full-time equivalent requirements of 4.8, 13.5, and 30.2 in years 1, 2, and 3, respectively. In contrast, the steady-state scenario assumed a constant monthly enrollment of 100 patients and yielded nurse full-time equivalent requirements of 5.8, 10.5, and 14.3 over the same time period. CONCLUSIONS:A needs-based workforce estimation model yielded health worker full-time equivalent estimates required for hypertension management in western Kenya. The model is able to provide workforce projections that are useful for program planning, human resource allocation, and policy formulation. This approach can serve as a benchmark for chronic disease management programs in low-resource settings worldwide.
PMID: 31311561
ISSN: 1478-4491
CID: 3977802

Air Pollution, Oxidative Stress, and Diabetes: a Life Course Epidemiologic Perspective

Lim, Chris C; Thurston, George D
PURPOSE OF REVIEW/OBJECTIVE:Ambient air pollution is strongly linked to cardiovascular and respiratory diseases. We summarize available published evidence regarding similar associations with diabetes across the life course. RECENT FINDINGS/RESULTS:) exposure contributes to more than 200,000 deaths from diabetes annually. There is a growing body of literature linking air pollution exposure during childhood and adulthood with diabetes etiology and related cardiometabolic biomarkers. A small number of studies found that exposure to air pollution during pregnancy is associated with elevated gestational diabetes risk among mothers. Studies examining prenatal air pollution exposure and diabetes risk among the offspring, as well as potential transgenerational effects of air pollution exposure, are very limited thus far. This review provides insight into how air pollutants affect diabetes and other metabolic dysfunction-related diseases across the different life stages.
PMID: 31325070
ISSN: 1539-0829
CID: 3978212