Patients with drug-resistant epilepsy (DRE) may benefit from specialized testing and treatments to better control seizures and improve quality of life. Most evaluations and procedures for DRE in the ...United States are performed at epilepsy centers accredited by the National Association of Epilepsy Centers (NAEC). On an annual basis, the NAEC collects data from accredited epilepsy centers on hospital-based epilepsy monitoring unit (EMU) size and admissions, diagnostic testing, surgeries, and other services. This article highlights trends in epilepsy center services from 2012 through 2019.
We analyzed data reported in 2012, 2016, and 2019 from all level 3 and level 4 NAEC accredited epilepsy centers. Data were described using frequency for categorical variables and median for continuous variables and were analyzed by center level and center population category. EMU beds, EMU admissions, epileptologists, and aggregate procedure volumes were also described using rates per population per year.
During the period studied, the number of NAEC accredited centers increased from 161 to 256, with the largest increases in adult- and pediatric-only centers. Growth in EMU admissions (41%), EMU beds (26%), and epileptologists (109%) per population occurred. Access to specialized testing and services broadly expanded. The largest growth in procedure volumes occurred in laser interstitial thermal therapy (LiTT) (61%), responsive neurostimulation (RNS) implantations (114%), and intracranial monitoring without resection (152%) over the study period. Corpus callosotomies and vagus nerve stimulator (VNS) implantations decreased (-12.8% and -2.4%, respectively), while growth in temporal lobectomies (5.9%), extratemporal resections (11.9%), and hemispherectomies/otomies (13.1%) lagged center growth (59%), leading to a decrease in median volumes of these procedures per center.
During the study period, the availability of specialty epilepsy care in the United States improved as the NAEC implemented its accreditation program. Surgical case complexity increased while aggregate surgical volume remained stable or declined across most procedure types, with a corresponding decline in cases per center. This article describes recent data trends and current state of resources and practice across NAEC member centers and identifies several future directions for driving systematic improvements in epilepsy care.
Persons with epilepsy, especially those with drug resistant epilepsy (DRE), may benefit from inpatient services such as admission to the epilepsy monitoring unit (EMU) and epilepsy surgery. The ...COVID-19 pandemic caused reductions in these services within the US during 2020. This article highlights changes in resources, admissions, and procedures among epilepsy centers accredited by the National Association of Epilepsy Centers (NAEC).
We compared data reported in 2019, prior to the COVID-19 pandemic, and 2020 from all 260 level 3 and level 4 NAEC accredited epilepsy centers. Data were described using frequency for categorical variables and median for continuous variables and were analyzed by center level, center population category, and geographical location. Qualitative responses from center directors to questions regarding the impact from COVID-19 were summarized utilizing thematic analysis. Responses from the NAEC center annual reports as well as a supplemental COVID-19 survey were included.
EMU admissions declined 23% (-21,515) in 2020, with largest median reductions in level 3 centers -55 admissions (-44%) and adult centers -57 admissions (-39%). The drop in admissions was more substantial in the East North Central, East South Central, Mid Atlantic, and New England US Census divisions. Survey respondents attributed reduced admissions to re-assigning EMU beds, restrictions on elective admissions, reduced staffing, and patient reluctance for elective admission. Treatment surgeries declined by 371 cases (5.7%), with the largest reduction occurring in VNS implantations -486 cases (-19%) and temporal lobectomies -227 cases (-16%). All other procedure volumes increased, including a 35% (54 cases) increase in corpus callosotomies.
In the US, access to care for persons with epilepsy declined during the COVID-19 pandemic in 2020. Adult patients, those relying on level 3 centers for care, and many persons in the eastern half of the US were most affected.
Pharmacovigilance, the science and practice of monitoring the effects of medicinals and their safety, is the responsibility of all stakeholders involved in the development, manufacture, regulation, ...distribution, prescription, and use of drugs and devices. The patient is the stakeholder most impacted by and the greatest source of information on safety issues. It is rare, however, for the patient to take a central role and exert leadership in the design and execution of pharmacovigilance. Patient organizations in the inherited bleeding disorders community are among the most established and empowered, particularly in the rare disorders. In this review, two of the largest bleeding disorders patient organizations, Hemophilia Federation of America (HFA) and National Hemophilia Foundation (NHF), offer insights into the priority actions required of all stakeholders to improve pharmacovigilance. The recent and ongoing increase in incidents raising safety concerns and a therapeutic landscape on the cusp of unprecedented expansion heighten the urgency of a recommitment to the primacy of patient safety and well-being in drug development and distribution.
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Patients at the center of product safety
Every medical device and therapeutic product has potential benefits and harms. The pharmaceutical and biomedical companies that develop them must demonstrate that they are effective, and the safety risks are limited or manageable, for regulators to approve them for use and sale. After the product has been approved and people are using it in their daily lives, it is important to continue to collect information about any negative side effects or adverse events; this is called pharmacovigilance. Regulators, like the United States (US) Food and Drug Administration, the companies that sell and distribute the products, and healthcare professionals who prescribe them are all required to participate in collecting, reporting, analyzing, and communicating this information. The people with the most firsthand knowledge of the benefits and harms of the drug or device are the patients who use them. They have an important responsibility to learn how to recognize adverse events, how to report them, and to stay informed of any news about the product from the other partners in the pharmacovigilance network. Those partners have a crucial responsibility to provide clear, easy-to-understand information to patients about any new safety concerns that come to light. The community of people with inherited bleeding disorders has recently encountered problems with poor communication of product safety issues, prompting two large US patient organizations, National Hemophilia Foundation and Hemophilia Federation of America, to hold a Safety Summit with all the pharmacovigilance network partners. Together they developed recommendations to improve the collection and communication of information about product safety so that patients can make well-informed, timely decisions about their use of drugs and devices. This article presents these recommendations in the context of how pharmacovigilance is supposed to work and some of the challenges encountered by the community.
The National Association of Epilepsy Centers first published the guidelines for epilepsy centers in 1990, which were last updated in 2010. Since that update, epilepsy care and the science of ...guideline development have advanced significantly, including the importance of incorporating a diversity of stakeholder perspectives such as those of patients and their caregivers. Currently, despite extensive published data examining the efficacy of treatments and diagnostic testing for epilepsy, there remain significant gaps in data identifying the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery. The trustworthy consensus-based statements (TCBS) process produces unbiased, scientifically valid guidelines through a transparent process that incorporates available evidence and expert opinion. A systematic literature search returned 5937 relevant studies from which 197 articles were retained for data extraction. A panel of 41 stakeholders with diverse expertise evaluated this evidence and drafted recommendations following the TCBS process. The panel reached consensus on 52 recommendations covering services provided by specialized epilepsy centers in both the inpatient and outpatient settings in major topic areas including epilepsy monitoring unit care, surgery, neuroimaging, neuropsychology, genetics, and outpatient care. Recommendations were informed by the evidence review and reflect the consensus of a broad panel of expert opinions.
This interpretive research examines the phenomenon of people who engage in designing for themselves in a world in which this is no longer necessary. For in this Schumpeterian society – one can simply ...purchase from a plethora of products and services that are designed by professionals, generated by producers, and made available for purchase via a myriad of channels. So why do people bother designing for ourselves? Drawing on in-depth interviews, this research provides insights into individuals who choose to participate in the design process. The findings that follow are from a representative study of individuals who recently were involved in designing their home kitchen. Results show that by engaging in design endeavors these informants received not only instrumental value (speed, efficiency) and economic value (money saved), but also socio-psychological value (signaling identity, desire for uniqueness) and transcendental value (joy, wonder, satisfaction). Framing these findings according to three foundational design actions – using, ideating, and making, the researcher developed a segmentation typology of the multi-faceted roles that people play in the act of designing. This study contributes to the existing literature by: (1) broadening the dyadic perspectives of provider and consumer roles in the realization of a design outcome; (2) revealing that when one engages in designing a desired outcome they create a deeper, more authentic, and abiding signaler of self than when we purchase what we seek; (3) extending design theory beyond the prevailing view that embeds the value of a design in outcome – the tool; and humans as homer faber, tool makers. Managerial and design practice implications offer specific suggestions for building and nurturing people in their design endeavors.
A factorial design randomized controlled trial to test several clinically feasible strategies primary-care practitioners may use in routine practice to increase patient participation in occult blood ...testing for colorectal cancer is reported. Three compliance-enhancing intervention strategies (physician/nurse talk, and/or reminder postcard, and/or reminder phone call) were introduced. Patient health beliefs were examined as compliance predictors. High compliance levels were seen in all intervention groups, with a mean of 89% compared with 68% in controls. An interactive talk by the physician or nurse increased compliance by 12-13%. The reminder postcard was the most effective single intervention. It increased compliance by 24-25%, achieving 92.7% overall compliance, and appeared to be cost-effective. Patient health beliefs were of minimal value in predicting compliance in this study.
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BFBNIB, INZLJ, NMLJ, NUK, PNG, UL, UM, UPUK, ZRSKP
This is an interdisciplinary and multicultural study of ancient and contemporary texts that encode women's spirituality. It encompasses both contemporary and historical contexts, tracing the roles, ...actions, writings, and beliefs of women in pre-Christian, Christian, Islamic, and neo-pagan contexts.
A coral reef is a rich resource patch in an otherwise nutrient poor ocean. In an analogous manner patches of clams may serve a similar function in oligotrophic fresh waters. By filtering the water ...column, clams are able to remove and concentrate nutrients from the water. The mucoid nature of feces and pseudofeces keeps substantial quantities of this nutritional material from washing away. Corbicula fluminea increase nutrient quality of water by the production of feces and pseudofeces. The shells of living and dead bivalves furnish substrate for attachment of sessile organisms and increase calcium concentration. A potential synergistic relationship exists between phytoplankton and clams in nutrient-poor waters. Corbicula supply areas of concentrated nutrients, rich in phosphate, which allows algal cells to grow. The increased concentrations of algal cells provide food to Corbicula. In a divided tank, containers with Corbicula were placed on one side and containers without clams were placed on the other side. Lake water was pumped through the tank for one month, then clams were removed and AGPT (Algal Growth Potential Test) phosphorus and calcium assays were performed on water samples from the containers. There was no difference in phosphorus and calcium results of water from containers with and without clams. AGPT results from containers with and without clams were notably higher than lake water. Containers with clams had statistically higher AGPT than containers without clams. Increased potential nutrients were attributed to feces and pseudofeces production. Leaching of calcium from clamshells incubated at 15°, 25° and 35°C in various ionic concentrations was also determined. These shells can serve as an additional source of calcium in oligotrophic waters.
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