The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study.

BACKGROUND: In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes. OBJECTIVE: The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients\u27 journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers. METHODS: We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs. RESULTS: Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS. CONCLUSIONS: This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence

Radiochemical indoor environment and public health risks in current building technologies

Apresentação em efectuada na "2nd Conference Environment and Public Health (EPH), Berlin-Potsdam, Germany, 2011"Development of building technologies is tightly connected in the network of energy saving demands of growing population, significant problems with waste and economy which tries to be self-sustainble, balancing between profit, social trends like fashion, need for higher living standard and rasing awareness of ireversible destroy of nature. In such social and economical environment building construction sector introduces new technologies and materials which brought large improvement in obeying all these demands but also produces a new complex indoor radiochemical environment. Elimination of waste such as a fly ash by its incorporation in concrete is significinat from the ecological viewpoint, but it may cause increased indoor emissions of ionizing radiation due to the fact that it may contain high levels of radioisotopes. Additionally to indoor radon which levels may be elevated due to regional soil characteristics, usage of zirconium and granit as fashionable elements of indoor finishing can also contribute to final increased exposure to ionizing radiation. Finishing indoor materials which contain nano particles, flame retardants, different organic compounds or ammonia combined with ionizing radiation may produce very complex health effects on occupants, especially on children and possible transplacental effects on fetal development. Introduction of occupancy/use permit which will include measurement of indoor radiochemical emissions will improve life standards and enable enforcement of politics in which occupants will have option to select residence with healty indoor environment. Building construction can be stimulated to apply for such permits via tax relief

Occurrence of OXA-107 and ISAba1 in carbapenem-resistant isolates of Acinetobacter baumannii from Croatia

Carbapenem-resistant isolates of Acinetobacter baumannii from intensive care units at Split University Hospital, Split, Croatia, were studied. Most (100 of 106) had ISAba1 inserted upstream of a bla(OXA-107) gene, encoding an unusual OXA-51-type oxacillinase. Pulsed-field gel electrophoresis revealed that the isolates formed three clusters belonging to the sequence group 2 (European clone 1) lineage

Validation of a life-logging wearable camera method and the 24-hour diet recall method for assessing maternal and child dietary diversity

Accurate and timely data are essential for identifying populations at risk for undernutrition due to poor-quality diets, for implementing appropriate interventions and for evaluating change. Life-logging wearable cameras (LLWC) have been used to prospectively capture food/beverage consumed by adults in high-income countries. This study aimed to evaluate the concurrent criterion validity, for assessing maternal and child dietary diversity scores (DDS), of a LLWC-based image-assisted recall (IAR) and 24-h recall (24HR). Direct observation was the criterion method. Food/beverage consumption of rural Eastern Ugandan mothers and their 12–23-month-old child (n 211) was assessed, for the same day for each method, and the IAR and 24HR DDS were compared with the weighed food record DDS using the Bland–Altman limits of agreement (LOA) method of analysis and Cohen’s κ. The relative bias was low for the 24HR (–0·1801 for mothers; –0·1358 for children) and the IAR (0·1227 for mothers; 0·1104 for children), but the LOA were wide (–1·6615 to 1·3012 and –1·6883 to 1·4167 for mothers and children via 24HR, respectively; –2·1322 to 1·8868 and –1·7130 to 1·4921 for mothers and children via IAR, respectively). Cohen’s κ, for DDS via 24HR and IAR, was 0·68 and 0·59, respectively, for mothers, and 0·60 and 0·59, respectively, for children. Both the 24HR and IAR provide an accurate estimate of median dietary diversity, for mothers and their young child, but non-differential measurement error would attenuate associations between DDS and outcomes, thereby under-estimating the true associations between DDS – where estimated via 24HR or IAR – and outcomes measured

Rapid generation of endogenously driven transcriptional reporters in cells through CRISPR/Cas9

CRISPR/Cas9 technologies have been employed for genome editing to achieve gene knockouts and knock-ins in somatic cells. Similarly, certain endogenous genes have been tagged with fluorescent proteins. Often, the detection of tagged proteins requires high expression and sophisticated tools such as confocal microscopy and flow cytometry. Therefore, a simple, sensitive and robust transcriptional reporter system driven by endogenous promoter for studies into transcriptional regulation is desirable. We report a CRISPR/Cas9-based methodology for rapidly integrating a firefly luciferase gene in somatic cells under the control of endogenous promoter, using the TGFβ-responsive gene PAI-1. Our strategy employed a polycistronic cassette containing a non-fused GFP protein to ensure the detection of transgene delivery and rapid isolation of positive clones. We demonstrate that firefly luciferase cDNA can be efficiently delivered downstream of the promoter of the TGFβ-responsive gene PAI-1. Using chemical and genetic regulators of TGFβ signalling, we show that it mimics the transcriptional regulation of endogenous PAI-1 expression. Our unique approach has the potential to expedite studies on transcription of any gene in the context of its native chromatin landscape in somatic cells, allowing for robust high-throughput chemical and genetic screens

Report on the main activities undertaken and preliminary findings emerging from research on the CGIAR Targeting Agricultural Innovations and Ecosystem Services in the northern Volta basin (TAI) project

The CGIAR Water, Land and Ecosystems research project on Targeting Agricultural Innovations and Ecosystem Services in the northern Volta basin (TAI) is a two year project (2014-2016) led by Bioversity International in collaboration with 11 institutes: CIAT, CIRAD, International Water Management Institute (IWMI), King’s College London (KCL), SNV World Burkina Faso (SNV), Stanford University, Stockholm Resilience Centre (SRC), University of Development Studies Ghana (UDS), University of Minnesota, University of Washington, and the World Agroforestry Institute. We are working with communities across Centre-Est Burkina Faso and Upper-East Ghana to gather empirical data, test research methodologies and co-develop knowledge on solutions to ecosystem service management challenges. Results from the project are still emerging and will continue to do so into 2017 as the team finish analysing the data and writing up their findings. This report presents the main activities accomplished and preliminary headline messages from the first 18 months of the project. Final results from the project will be made available in 2017 on the WLE website

a potential solution to some of the challenges of modern biomedical research

Background Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross- border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re- consider their relationship with research participants and adopt new procedures

Patient satisfaction with healthcare provided by family doctors: primary dimensions and an attempt at typology

<p>Abstract</p> <p>Background</p> <p>Patient satisfaction is a complex and difficult concept to measure, thus precluding the use of exclusively quantitative methods for its description. The purpose of this survey was firstly to identify particular healthcare dimensions that determine a patient's satisfaction or dissatisfaction; and secondly to attempt to typologise the patients' responses based on their evaluation of healthcare.</p> <p>Methods</p> <p>Using a qualitative research design, thirty-six in-depth interviews with patients of family physicians were conducted: four patients from each of 9 family practices in different regions of Poland were interviewed. The main outcome measure was factors associated with patient satisfaction/dissatisfaction.</p> <p>Results</p> <p>In their evaluations of their contacts with family doctors, the patients cited mostly issues concerning interpersonal relationships with the doctor. Nearly 40% of the statements referred to this aspect of healthcare, with nearly equal proportions of positive and negative comments. The second most frequent category of responses concerned contextual factors (21%) that related to conditions of medical service, with two-thirds of the evaluations being negative. Statements concerning the doctor's competencies (12.9%) and personal qualities (10.5%) were less common.</p> <p>Conclusion</p> <p>To improve the quality of healthcare, family doctors should take special care to ensure the quality of their interactions with patients.</p