Systematic review of unmet healthcare needs in patients with epilepsy

ObjectivePatients with epilepsy (PWE) are more likely to have unmet healthcare needs than the general population. This systematic review assessed the reasons for unmet needs in PWE.MethodsMedline, Embase, PsycINFO, Cochrane, and Web of Science databases were searched using keywords relating to unmet healthcare needs, treatment barriers, and access to care. The search included all countries, adult and pediatric populations, survey and qualitative studies, but excluded non-English articles and articles published before 2001. Reasons for unmet needs were extracted.ResultsNineteen survey and 22 qualitative studies were included. Three survey and five qualitative studies excluded patients with comorbidities. There were twice as many studies on unmet mental healthcare needs than unmet physical care needs in PWE. Poor availability of health services, accessibility issues, and lack of health information contributed to unmet needs in both Western and developing countries. Lack of health services, long wait lists, uncoordinated care, and difficulty getting needed health information were prevalent in the United States (US) as well as countries with a universal healthcare system. However, unmet needs due to costs of care were reported more commonly in studies from the US.SignificanceThis systematic review identified reasons for unmet needs in PWE across different countries, which will inform specific interventions required to address these unmet needs. Unmet needs may have been underestimated due to exclusion of PWE with comorbidities in some studies. Additional studies are needed to understand the contribution of comorbidities on unmet needs and their interaction with caregiver and family factors.     

Guidance for the diagnosis and treatment of hypolipidemia disorders

The Abetalipoproteinemia and Related Disorders Foundation was established in 2019 to provide guidance and support for the life-long management of inherited hypocholesterolemia disorders. Our mission is “to improve the lives of individuals and families affected by abetalipoproteinemia and related disorders”. This review explains the molecular mechanisms behind the monogenic hypobetalipoproteinemia disorders and details their specific pathophysiology, clinical presentation and management throughout the lifespan. In this review, we focus on abetalipoproteinemia, homozygous hypobetalipoproteinemia and chylomicron retention disease; rare genetic conditions that manifest early in life and cause severe complications without appropriate treatment. Absent to low plasma lipid levels, in particular cholesterol and triglyceride, along with malabsorption of fat and fat-soluble vitamins are characteristic features of these diseases. We summarize the genetic basis of these disorders, provide guidance in their diagnosis and suggest treatment regimens including high dose fat-soluble vitamins as therapeutics. A section on preconception counseling and other special considerations pertaining to pregnancy is included. This information may be useful for patients, caregivers, physicians and insurance agencies involved in the management and support of affected individuals.     

Mentoring junior URM scientists to engage in sleep health disparities research: experience of the NYU PRIDE Institute

AimThe aim of this study was to evaluate the National Institute of Health (NIH)-funded PRIDE Institute in Behavioral Medicine and Sleep Disorders Research at New York University (NYU) Langone Medical Center. The NYU PRIDE Institute provides intensive didactic and mentored research training to junior underrepresented minority (URM) faculty.MethodThe Kirkpatrick model, a mixed-methods program evaluation tool, was used to gather data on participant's satisfaction and program outcomes. Quantitative evaluation data were obtained from all 29 mentees using the PRIDE REDcap-based evaluation tool. In addition, in-depth interviews and focus groups were conducted with 17 mentees to learn about their experiences at the institute and their professional development activities. Quantitative data were examined, and emerging themes from in-depth interviews and focus groups were studied for patterns of connection and grouped into broader categories based on grounded theory.ResultsOverall, mentees rated all programmatic and mentoring aspects of the NYU PRIDE Institute very highly (80–100%). They identified the following areas as critical to their development: research and professional skills, mentorship, structured support and accountability, peer support, and continuous career development beyond the summer institute. Indicators of academic self-efficacy showed substantial improvement over time. Areas for improvement included tailoring programmatic activities to individual needs, greater assistance with publications, and identifying local mentors when K awards are sought.ConclusionsIn order to promote career development, numerous factors that uniquely influence URM investigators' ability to succeed should be addressed. The NYU PRIDE Institute, which provides exposure to a well-resourced academic environment, leadership, didactic skills building, and intensive individualized mentorship proved successful in enabling URM mentees to excel in the academic environment. Overall, the institute accomplished its goals: to build an infrastructure enabling junior URM faculty to network with one another as well as with senior investigators, serving as a role model, in a supportive academic environment.     

Breast Cancer: Do Specialists Make a Difference?

Background: Many believe that breast cancer should be treated by specialists. We studied the effect of surgeon and hospital specialization on survival after breast cancer treatment in a large, well-defined patient population.Methods: The Cancer Surveillance Program database for Los Angeles County was reviewed. Between 1990 and 1998, 43,411 cases of breast cancer were diagnosed, of which 29,666 had complete data on surgeon, hospital, and staging information. Patients were stratified on the basis of surgeon and hospital specialization, as well as by age, race, stage, surgical procedure, and surgeon and hospital case volume. An analysis of survival and its dependence on these factors was performed.Results: Age, race, socioeconomic status, tumor size, nodal status, extent of disease, surgeon specialization, surgeon case volume, and hospital case volume were all associated with 5-year survival after diagnosis of breast cancer. Treatment at a specialty center did not affect survival. Multivariate analysis indicated that type of surgeon was an independent predictor of survival (relative risk, .77), as were both hospital and surgeon case volume.Conclusions: Treatment by a surgical oncologist resulted in a 33% reduction in the risk of death at 5 years. The effect of surgical specialization cannot be entirely attributed to volume effects.     

Fast versus slow onset of depressive episodes: A clinical criterion for subtyping patients with major depression

PurposeThe speed of onset of depressive episodes is a clinical aspect of affective disorders that has not been sufficiently investigated. Thus, we aimed to explore whether patients with fast onset of the full-blown depressive symptomatology (≤ 7 days) differ from those with slow onset (> 7 days) with regard to demographic and clinical aspects.Subjects and methodsData were obtained within an observational study conducted in outpatients with major depression who were treated with duloxetine (30–120 mg/day). Onset of depression (without any preceding critical life event) was fast in 416 (less than one week) and slower in 2220 patients.ResultsCompared to patients with slow onset, those with fast onset of depression had more suicide attempts in the previous 12 months (2.7% versus 1.3%, P = 0.046) and less somatic comorbidity (61.7% versus 74.1%, P < 0.0001). In addition, they were slightly younger at onset of depression (mean ± SD 40.2 ± 14.6 versus 42.8 ± 14.2 years, P < 0.001) and used analgesics at baseline significantly less frequently (22.8% versus 33.4%, P < 0.0001).Discussion and conclusionThe speed of onset of depression has to be regarded as a relevant clinical characteristic in patients with unipolar depression.     

The Medical Dialogue: Disentangling Differences between Hispanic and non-Hispanic Whites

BACKGROUND Patients’ race and ethnicity play an important role in quality of and access to healthcare in the United States. OBJECTIVES To examine the influence of ethnicity – Hispanic whites vs. non-Hispanic whites – on respondents’ self-reported interactions with healthcare providers. To understand, among Hispanic whites, how demographic and socioeconomic characteristics impact their interactions with healthcare providers. DESIGN Cross-sectional analysis of the 2002 Medical Expenditure Panel Survey, a nationally representative survey on medical care conducted by the Agency for Healthcare Research and Quality. PARTICIPANTS Civilian, noninstitutionalized U.S. population aged ≥18 years who reported visiting a healthcare provider within the past 12 months prior to data collection. RESULTS After controlling for several demographic and socioeconomic covariates, compared to non-Hispanic whites (reference group), Hispanic whites who had visited a doctor’s office or clinic in the past 12 months were more likely to report that their healthcare provider “always” listened to them [odds ratio (OR) = 1.36, 95% confidence interval (CI) 1.21–1.53], explained things so that they understood (OR = 1.25, 95% CI 1.10–1.41), showed respect for what they had to say (OR = 1.52, 95% CI 1.35–1.72), and spent enough time with them (OR = 1.22, 95% CI 1.08–1.38). However, Hispanics were less likely to indicate that their health care provider “always” gave them control over treatment options (OR = 0.83, 95% CI 0.72–0.95) as compared to non-Hispanics. Within the Hispanic population exclusively, age, place of residence, census region, health insurance status, and presence of a usual source of care influenced self-reported interactions with healthcare providers. CONCLUSION Hispanic white respondents were more likely to report that some aspects of provider–patient interactions were indicative of high quality, whereas those related to decision-making autonomy were not. These somewhat paradoxical results should be examined more fully in future research.     

Spike Train Analysis Toolkit: Enabling Wider Application of Information-Theoretic Techniques to Neurophysiology

Conventional methods widely available for the analysis of spike trains and related neural data include various time- and frequency-domain analyses, such as peri-event and interspike interval histograms, spectral measures, and probability distributions. Information theoretic methods are increasingly recognized as significant tools for the analysis of spike train data. However, developing robust implementations of these methods can be time-consuming, and determining applicability to neural recordings can require expertise. In order to facilitate more widespread adoption of these informative methods by the neuroscience community, we have developed the Spike Train Analysis Toolkit. STAToolkit is a software package which implements, documents, and guides application of several information-theoretic spike train analysis techniques, thus minimizing the effort needed to adopt and use them. This implementation behaves like a typical Matlab toolbox, but the underlying computations are coded in C for portability, optimized for efficiency, and interfaced with Matlab via the MEX framework. STAToolkit runs on any of three major platforms: Windows, Mac OS, and Linux. The toolkit reads input from files with an easy-to-generate text-based, platform-independent format. STAToolkit, including full documentation and test cases, is freely available open source via , maintained as a resource for the computational neuroscience and neuroinformatics communities. Use cases drawn from somatosensory and gustatory neurophysiology, and community use of STAToolkit, demonstrate its utility and scope.