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https://www.readbyqxmd.com/read/29228163/ethical-challenges-confronted-when-providing-nusinersen-treatment-for-spinal-muscular-atrophy
#1
Alyssa M Burgart, David Magnus, Holly K Tabor, Erin Daksha-Talati Paquette, Joel Frader, Jaqueline J Glover, Brian M Jackson, Charlotte H Harrison, David K Urion, Robert J Graham, John F Brandsema, Chris Feudtner
The US Food and Drug Administration's December 2016 approval of nusinersen for the treatment of patients with all subtypes of spinal muscular atrophy ushered in a new era for patients with spinal muscular atrophy, their families, and all those involved in their care. The extreme cost of the medication and the complicated logistical requirements for administering nusinersen via lumbar puncture have created practical challenges that raise important ethical considerations. We discuss 6 challenges faced at the institutional level in the United States: cost, limited evidence, informed consent, treatment allocation, fair distribution of responsibilities, and transparency with stakeholders...
December 11, 2017: JAMA Pediatrics
https://www.readbyqxmd.com/read/29227948/points-of-attention-in-designing-tools-for-regional-brownfield-prioritization
#2
Elsa Limasset, Lisa Pizzol, Corinne Merly, Annette M Gatchett, Cécile Le Guern, Stanislav Martinát, Petr Klusáček, Stephan Bartke
The regeneration of brownfields has been increasingly recognized as a key instrument in sustainable land management, since free developable land (or so called "greenfields") has become a scare and more expensive resource, especially in densely populated areas. However, the complexity of these sites requires considerable efforts to successfully complete their revitalization projects, thus requiring the development and application of appropriate tools to support decision makers in the selection of promising sites where efficiently allocate the limited financial resources...
December 8, 2017: Science of the Total Environment
https://www.readbyqxmd.com/read/29227937/identify-stakeholders-understandings-of-life-cycle-assessment-results-on-wastewater-related-issues
#3
Shunwen Bai, Xueqin Zhu, Xiuheng Wang, Nanqi Ren
To facilitate decision-making processes in waste management, it is important to not only evaluate environmental impacts, but also to measure how stakeholders form opinions and make choices based one valuation results. Life cycle assessments (LCAs) have been widely used to evaluate environmental impacts; however, LCAs cannot be used to measure how people make judgments based on evaluation results. As such, in this study, we combined LCA with conjoint analysis, an economic method that allows individuals to consider all factors and demonstrate their preferences simultaneously...
December 8, 2017: Science of the Total Environment
https://www.readbyqxmd.com/read/29227887/-there-is-not-a-safe-space-where-they-can-find-themselves-to-be-free-un-safe-spaces-and-the-promotion-of-queer-visibilities-among-township-males-who-have-sex-with-males-msm-in-cape-town-south-africa
#4
N R Hassan, L Swartz, A Kagee, A De Wet, A Lesch, Z Kafaar, P A Newman
Males who have sex with males (MSM) are prioritised in the global fight against HIV/AIDS, as a key affected population to receive HIV prevention, treatment, and HIV-related care and support (WHO, 2016). There is, however, limited empirical research conducted on how to engage communities of South African MSM in clinical HIV prevention research programs. The development of LGBTIQ safe spaces may potentially be a viable option to promote community-based engagement by bridging the divides between HIV-prevention researchers, marginalised queer populations, and other HIV-prevention stakeholders located in heteronormative spaces (Molyneux et al...
December 8, 2017: Health & Place
https://www.readbyqxmd.com/read/29227422/assessment-of-the-sustainability-capacity-of-a-coordinated-approach-to-chronic-disease-prevention
#5
Sarah Moreland-Russell, Todd Combs, LaShaun Polk, Sarah Dexter
OBJECTIVE: This article outlines some factors that influenced the sustainability capacity of a coordinated approach to chronic disease prevention in state and territory health departments. DESIGN: This study involved a cross-sectional design and mixed-methods approach. Quantitative data were collected using the Program Sustainability Assessment Tool (PSAT), a 40-item multiple-choice instrument that assesses 8 domains of sustainability capacity (environmental support, funding stability, partnerships, organizational capacity, program evaluation, program adaptation, communications, and strategic planning)...
December 7, 2017: Journal of Public Health Management and Practice: JPHMP
https://www.readbyqxmd.com/read/29227132/mental-illness-in-bwindi-uganda-understanding-stakeholder-perceptions-of-benefits-and-barriers-to-developing-a-community-based-mental-health-programme
#6
Kristen L Sessions, Lydia Wheeler, Arya Shah, Deenah Farrell, Edwin Agaba, Yusufu Kuule, Stephen P Merry
BACKGROUND: Mental illness has been increasingly recognised as a source of morbidity in low- and middle-income countries and significant treatment gaps exist worldwide. Studies have demonstrated the effectiveness of task sharing through community-based treatment models for addressing international mental health issues. AIM: This paper aims to evaluate the perceptions of a wide range of mental health stakeholders in a Ugandan community regarding the benefits and barriers to developing a community-based mental health programme...
November 30, 2017: African Journal of Primary Health Care & Family Medicine
https://www.readbyqxmd.com/read/29226793/cultural-translation-of-refugee-trauma-cultural-idioms-of-distress-among-somali-refugees-in-displacement
#7
Hyojin Im, Aidan Ferguson, Margaret Hunter
Westernized approaches to mental health care often place limited emphasis on refugees' own experiences and cultural explanations of symptoms and distress. In order to effectively assess community mental health needs and develop interventions grounded in local needs, mental health programs need to be informed by an understanding of cultural features of mental health, including cultural idioms of distress (CIDs). The current study aims to explore CIDs among Somali refugees displaced in Kenya to understand mental health needs in cultural context and serve the community in a culturally responsive and sensitive manner...
October 2017: Transcultural Psychiatry
https://www.readbyqxmd.com/read/29226604/an-international-qualitative-study-of-functioning-in-autism-spectrum-disorder-using-the-world-health-organization-international-classification-of-functioning-disability-and-health-framework
#8
Soheil Mahdi, Marisa Viljoen, Tamara Yee, Melissa Selb, Nidhi Singhal, Omar Almodayfer, Mats Granlund, Petrus J de Vries, Lonnie Zwaigenbaum, Sven Bölte
This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden...
December 11, 2017: Autism Research: Official Journal of the International Society for Autism Research
https://www.readbyqxmd.com/read/29226448/better-measurement-for-performance-improvement-in-low-and-middle-income-countries-the-primary-health-care-performance-initiative-phcpi-experience-of-conceptual-framework-development-and-indicator-selection
#9
Jeremy Veillard, Krycia Cowling, Asaf Bitton, Hannah Ratcliffe, Meredith Kimball, Shannon Barkley, Laure Mercereau, Ethan Wong, Chelsea Taylor, Lisa R Hirschhorn, Hong Wang
Policy Points: Strengthening accountability through better measurement and reporting is vital to ensure progress in improving quality primary health care (PHC) systems and achieving universal health coverage (UHC). The Primary Health Care Performance Initiative (PHCPI) provides national decision makers and global stakeholders with opportunities to benchmark and accelerate performance improvement through better performance measurement. Results from the initial PHC performance assessments in low- and middle-income countries (LMICs) are helping guide PHC reforms and investments and improve the PHCPI's instruments and indicators...
December 2017: Milbank Quarterly
https://www.readbyqxmd.com/read/29226382/substantial-injuries-influence-ranking-position-in-young-elite-athletes-of-athletics-cross-country-skiing-orienteering
#10
Philip von Rosen, Annette Heijne
The relationship between injury and performance in young athletes is scarcely studied. The aim of this study was therefore to explore the association between injury prevalence and ranking position among adolescent elite athletes. 162 male and female adolescent elite athletes (age range 15-19), competing in athletics (n=59), cross-country skiing (n=66) and orienteering (n=37), were monitored weekly over 22-47 weeks using a web-based injury questionnaire. Ranking lists were collected. A significant (p=.003) difference was found in the seasonal substantial injury prevalence across the ranked athletes over the season, where the top-ranked (median 3...
December 11, 2017: Scandinavian Journal of Medicine & Science in Sports
https://www.readbyqxmd.com/read/29226096/feasibility-of-two-active-case-finding-approaches-for-detection-of-tuberculosis-in-bandung-city-indonesia
#11
S McAllister, B Wiem Lestari, B Sujatmiko, A Siregar, E D Sihaloho, D Fathania, N F Dewi, R C Koesoemadinata, P C Hill, B Alisjahbana
Setting: A community health clinic catchment area in the eastern part of Bandung City, Indonesia. Objective: To evaluate the feasibility of two different screening interventions using community health workers (CHWs) in detecting tuberculosis (TB) cases. Design: This was a feasibility study of 1) house-to-house TB symptom screening of five randomly selected 'neighbourhoods' in the catchment area, and 2) selected screening of household contacts of TB index patients and their neighbouring households. Acceptability was assessed through focus group discussions with key stakeholders...
September 21, 2017: Public Health Action
https://www.readbyqxmd.com/read/29225958/overcoming-challenges-in-implementing-the-who-surgical-safety-checklist-lessons-learnt-from-using-a-checklist-training-course-to-facilitate-rapid-scale-up-in-madagascar
#12
REVIEW
Kristin L Close, Linden S Baxter, Vaonandianina A Ravelojaona, Hasiniaina N Rakotoarison, Emily Bruno, Alison Herbert, Vanessa Andean, James Callahan, Hery H Andriamanjato, Michelle C White
The WHO Surgical Safety Checklist was launched in 2009, and appropriate use reduces mortality, surgical site infections and complications after surgery by up to 50%. Implementation across low-income and middle-income countries has been slow; published evidence is restricted to reports from a few single institutions, and significant challenges to successful implementation have been identified and presented. The Mercy Ships Medical Capacity Building team developed a multidisciplinary 3-day Surgical Safety Checklist training programme designed for rapid wide-scale implementation in all regional referral hospitals in Madagascar...
2017: BMJ Global Health
https://www.readbyqxmd.com/read/29225957/limited-sterile-processing-capabilities-for-safe-surgery-in-low-income-and-middle-income-countries-experience-in-the-republic-of-congo-madagascar-and-benin
#13
REVIEW
Olive Fast, Christina Fast, Dan Fast, Suzanne Veltjens, Zouliha Salami, Michelle C White
It is highly difficult to perform safe surgery without sterile instruments, yet the capacity to adequately clean, disinfect and sterilise surgical instruments in low-income and middle-income countries is largely unknown. Sterile Processing Education Charitable Trust developed an assessment tool and, in partnership with Mercy Ships, evaluated the sterile processing capacity in 59 facilities in Madagascar, Benin and the Republic of Congo. This data-driven analysis paper illustrates how lack of sterile processing capacity acts as a barrier to safe surgical care...
2017: BMJ Global Health
https://www.readbyqxmd.com/read/29225953/what-is-health-systems-responsiveness-review-of-existing-knowledge-and-proposed-conceptual-framework
#14
Tolib Mirzoev, Sumit Kane
Responsiveness is a key objective of national health systems. Responsive health systems anticipate and adapt to existing and future health needs, thus contributing to better health outcomes. Of all the health systems objectives, responsiveness is the least studied, which perhaps reflects lack of comprehensive frameworks that go beyond the normative characteristics of responsive services. This paper contributes to a growing, yet limited, knowledge on this topic. Herewith, we review the current frameworks for understanding health systems responsiveness and drawing on these, as well as key frameworks from the wider public services literature, propose a comprehensive conceptual framework for health systems responsiveness...
2017: BMJ Global Health
https://www.readbyqxmd.com/read/29225945/reproductive-maternal-neonatal-and-child-health-in-conflict-a-case-study-on-syria-using-countdown-indicators
#15
Jocelyn DeJong, Hala Ghattas, Hyam Bashour, Rima Mourtada, Chaza Akik, Amelia Reese-Masterson
Introduction: Women and children account for a disproportionate morbidity burden among conflict-affected populations, and yet they are not included in global accountability frameworks for women's and children's health. We use Countdown to 2015 (Millennium Development Goals) health indicators to provide an up-to-date review and analysis of the best available data on Syrian refugees in Jordan, Lebanon and Turkey and internally displaced within Syria and explore data challenges in this conflict setting...
2017: BMJ Global Health
https://www.readbyqxmd.com/read/29225931/community-preferences-for-a-social-health-insurance-benefit-package-an-exploratory-study-among-the-uninsured-in-vietnam
#16
Hoa Thi Nguyen, Tinh Viet Luu, Gerald Leppert, Manuela De Allegri
Understanding public preferences in terms of health benefit packages (HBPs) remains limited, yet gathering community insights is an important endeavour when developing people-centred health systems and moving towards universal health coverage. Our study aimed to address this gap in knowledge by eliciting community preferences for the social health insurance benefit package among the uninsured in Vietnam. We adopted a mixed methods approach that included a ranking exercise followed by focus group discussions...
2017: BMJ Global Health
https://www.readbyqxmd.com/read/29225922/using-participatory-learning-action-pla-research-techniques-for-inter-stakeholder-dialogue-in-primary-healthcare-an-analysis-of-stakeholders-experiences
#17
T de Brún, M O'Reilly-de Brún, E Van Weel-Baumgarten, N Burns, C Dowrick, C Lionis, C O'Donnell, F S Mair, M Papadakaki, A Saridaki, W Spiegel, C Van Weel, M Van den Muijsenbergh, A MacFarlane
Plain English summary: It is important for health care workers to know the needs and expectations of their patients. Therefore, service users have to be involved in research. To achieve a meaningful dialogue between service users, healthcare workers and researchers, participatory methods are needed. This paper describes how the application of a specific participatory methodology, Participatory Learning and Action (PLA) can lead to such a meaningful dialogue. In PLA all stakeholders are regarded as equal partners and collaborators in research...
2017: Research Involvement and Engagement
https://www.readbyqxmd.com/read/29225436/perspective-late-stage-t4-translation-research-and-implementation-science-the-national-heart-lung-and-blood-institute-strategic-vision
#18
EDITORIAL
George A Mensah, Cheryl Anne Boyce, LeShawndra N Price, Helena O Mishoe, Michael M Engelgau
In August 2016, the National Heart, Lung, and Blood Institute (NHLBI) released its Strategic Vision for charting a course for research over the next decade. This vision was the culmination of an unprecedented process that engaged diverse stakeholders from across the United States and around the globe. The process resulted in four mission-oriented goals and eight strategic objectives that provide an overall framework for advancing research in heart, lung, and blood diseases and sleep disorders. In this perspective, we address opportunities that NHLBI has identified to advance late-stage (T4) translation research, implementation science, health inequities research, global health research, and related research workforce development...
2017: Ethnicity & Disease
https://www.readbyqxmd.com/read/29224963/meeting-report-initial-world-health-organization-consultation-on-herpes-simplex-virus-hsv-vaccine-preferred-product-characteristics-march-2017
#19
Sami L Gottlieb, Birgitte K Giersing, Julian Hickling, Rebecca Jones, Carolyn Deal, David C Kaslow
The development of vaccines against herpes simplex virus (HSV) is an important global goal for sexual and reproductive health. A key priority to advance development of HSV vaccines is the definition of preferred product characteristics (PPCs), which provide strategic guidance on World Health Organization (WHO) preferences for new vaccines, specifically from a low- and middle-income country (LMIC) perspective. To start the PPC process for HSV vaccines, the WHO convened a global stakeholder consultation in March 2017, to define the priority public health needs that should be addressed by HSV vaccines and discuss the key considerations for HSV vaccine PPCs, particularly for LMICs...
December 7, 2017: Vaccine
https://www.readbyqxmd.com/read/29224784/ethics-based-global-health-research-for-all-including-women-children-indigenous-people-lgbtqi-people-with-disabilities-refugees-and-other-relevant-stakeholders-especially-in-least-developing-countries-and-small-island-developing-states-in-the-global-south
#20
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