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Stang, Paul E., and Jane T. Osterhaus. "Impact of Migraine in the United States: Data from the National Health Interview Survey." Headache: The Journal of Head and Face Pain 33, no. 1 (January 1993): 29–35. http://dx.doi.org/10.1111/j.1526-4610.1993.hed3301029.x.
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Agarwal, Nitin, Phillip A. Choi, David O. Okonkwo, Daniel L. Barrow, and Robert M. Friedlander. "Financial burden associated with the residency match in neurological surgery." Journal of Neurosurgery 126, no. 1 (January 2017): 184–90. http://dx.doi.org/10.3171/2015.12.jns15488.
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OBJECTIVE Application for a residency position in neurosurgery is a highly competitive process. Visiting subinternships and interviews are integral parts of the application process that provide applicants and programs with important information, often influencing rank list decisions. However, the process is an expensive one that places significant financial burden on applicants. In this study, the authors aimed to quantify expenses incurred by 1st-year neurosurgery residents who matched into a neurosurgery residency program in 2014 and uncover potential trends in expenses. METHODS A 10-question survey was distributed in partnership with the Society of Neurological Surgeons to all 1st-year neurosurgery residents in the United States. The survey asked respondents about the number of subinternships, interviews, and second looks (after the interview) attended and the resultant costs, the type of program match, preferences for subinternship interviews, and suggestions for changes they would like to see in the application process. In addition to compiling overall results, also examined were the data for differences in cost when stratifying for region of the medical school or whether the respondent had contact with the program they matched to prior to the interview process (matched to home or subinternship program). RESULTS The survey had a 64.4% response rate. The mean total expenses for all components of the application process were US $10,255, with interview costs comprising the majority of the expenses (69.0%). No difference in number of subinternships, interviews, or second looks attended, or their individual and total costs, was seen for applicants from different regions of the United States. Respondents who matched to their home or subinternship program attended fewer interviews than respondents who had no prior contact with their matched program (13.5 vs 16.4, respectively, p = 0.0023) but incurred the same overall costs (mean $9774 vs $10,566; p = 0.58). CONCLUSIONS Securing a residency position in neurosurgery is a costly process for applicants. No differences are seen when stratifying by region of medical school attended or contact with a program prior to interviewing. Interview costs comprise the majority of expenses for applicants, and changes to the application process are needed to control costs incurred by applicants.
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Limoges, Natalie, Scott L. Zuckerman, Lola B. Chambless, Deborah L. Benzil, Aurora Cruz, Jonathan H. Borden, and Susan Durham. "Neurosurgery Resident Interviews: The Prevalence and Impact of Inappropriate and Potentially Illegal Questions." Neurosurgery 89, no. 1 (March 17, 2021): 53–59. http://dx.doi.org/10.1093/neuros/nyab059.
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Abstract BACKGROUND The impact of workplace discrimination has gained recognition. Nearly two-thirds of all medical residency applicants reported being asked inappropriate or potentially illegal interview questions. The use of such questions during neurosurgery residency interviews has not yet been studied. OBJECTIVE To evaluate the prevalence of inappropriate or potentially illegal questions in residency interviews and the impact on applicants’ rank lists. METHODS All 2018 to 2019 United States neurosurgery resident applicants were anonymously surveyed. The survey included 46 questions focused on demographics; if they were asked questions regarding rank list, age, gender, marital status, family planning, religion, sexual orientation, or disability and whether such questions affected their rank list formation. RESULTS Of 265 surveyed United States applicants, 133 (50%) responded. Most respondents were male (78%), 24% were married, and 10% had children. During the formal interview, 94% were asked at least 1 inappropriate or potentially illegal question. About 78% reported being asked about marital status, 29% were asked about intent to have children. About 46% reported being counseled on their personal life, 30% were asked about their ethnic background, and 15% were asked about their religion. A total of 2 candidates reported questions about mental illness/disability, and 2 candidates reported being asked about sexual orientation. About 45% of applicants that were asked at least 1 of these questions ranked those programs lower. CONCLUSION Nearly all (94%) neurosurgical residency applicants reported being asked at least 1 inappropriate or potentially illegal question during interviews. Our results indicate that inappropriate questions negatively affected program rankings.
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Victor, TW, X. Hu, JC Campbell, DC Buse, and RB Lipton. "Migraine prevalence by age and sex in the United States: A life-span study." Cephalalgia 30, no. 9 (March 12, 2010): 1065–72. http://dx.doi.org/10.1177/0333102409355601.
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The present study assessed age- and sex-specific patterns of migraine prevalence in a US population of 40,892 men, women, and children who participated in the 2003 National Health Interview Survey. Gaussian mixture models characterised the relationship between migraine, age, and sex. Migraine prevalence was 8.6% (males), 17.5% (females), and 13.2% (overall) and showed a bimodal distribution in both sexes (peaking in the late teens and 20s and around 50 years of age). Rate of change in migraine prevalence for both sexes increased the fastest from age 3 years to the mid-20s. Beyond the age of 10 years, females had a higher prevalence of migraine than males. The prevalence ratio for females versus males was highest during the female reproductive/child-bearing years, consistent with a relationship between menstruation and migraine. After age 42 years, the prevalence ratio was approximately 2-fold higher in women.
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Bhattacharyya, Neil. "The Prevalence of Dysphagia among Adults in the United States." Otolaryngology–Head and Neck Surgery 151, no. 5 (September 5, 2014): 765–69. http://dx.doi.org/10.1177/0194599814549156.
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Objective To determine the prevalence of dysphagia, reported etiologies, and impact among adults in the United States. Study Design Cross-sectional analysis of a national health care survey. Subjects and Methods The 2012 National Health Interview Survey was analyzed, identifying adult cases reporting a swallowing problem in the preceding 12 months. In addition to demographic data, specific data regarding visits to health care professionals for swallowing problems, diagnoses given, and severity of the swallowing problem were analyzed. The relationship between swallowing problems and lost workdays was assessed. Results An estimated 9.44 ± 0.33 million adults (raw N = 1554; mean age, 52.1 years; 60.2% ± 1.6% female) reported a swallowing problem (4.0% ± 0.1%). Overall, 22.7% ± 1.7% saw a health care professional for their swallowing problem, and 36.9% ± 0.1.7% were given a diagnosis. Women were more likely than men to report a swallowing problem (4.7% ± 0.2% versus 3.3% ± 0.2%, P < .001). Of the patients, 31.7% and 24.8% reported their swallowing problem to be a moderate or a big/very big problem, respectively. Stroke was the most commonly reported etiology (422,000 ± 77,000; 11.2% ± 1.9%), followed by other neurologic cause (269,000 ± 57,000; 7.2% ± 1.5%) and head and neck cancer (185,000 ± 40,000; 4.9% ± 1.1%). The mean number of days affected by the swallowing problem was 139 ± 7. Respondents with a swallowing problem reported 11.6 ± 2.0 lost workdays in the past year versus 3.4 ± 0.1 lost workdays for those without a swallowing problem (contrast, +8.1 lost workdays, P < .001). Conclusion Swallowing problems affect 1 in 25 adults, annually. A relative minority seek health care for their swallowing problem, even though the subjective impact and associated workdays lost with the swallowing problem are significant.
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Harris, Gavin H., Kimberly J. Rak, Jeremy M. Kahn, Derek C. Angus, Erin A. Caplan, Olivia Mancing, Julia Driessen, and David J. Wallace. "1651. The Impact of the 2017–2018 Influenza Season on Acute Care Hospitals in the United States: A Qualitative Evaluation of Immediate Responses and Future Preparedness." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S603—S604. http://dx.doi.org/10.1093/ofid/ofz360.1515.
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Abstract Background The 2017–2018 influenza season was characterized by high illness severity, wide geographic spread, and prolonged duration compared with recent years in the United States – resulting in an increased number of emergency department evaluations and hospital admissions. The current study explored how US hospitals perceived the impact of influenza during this time period, including effects on patient volumes, ways in which hospitals responded, and how lessons learned were incorporated into future influenza preparedness. Methods We conducted semi-structured phone interviews with capacity management personnel in short-term acute care hospitals across the United States. A random hospital sample was created using Centers for Medicare and Medicaid Services annual reports. Hospitals self-identified key informants who were involved with throughput and capacity. The interview guide was developed and pilot tested by a team of clinicians and qualitative researchers, with interviews conducted between April 2018 and January 2019. We performed thematic content analysis to identify how hospitals experienced the 2017–2018 influenza season. Results We achieved thematic saturation after 53 interviews. Responses conformed to three thematic domains: impacts on staff and patient care, immediate staffing and capacity responses, and future preparedness (Table 1). Hospitals almost universally reported increased emergency department and inpatient volumes that frequently resulted in strain across the hospital. Strain was created by both increased patient volume and staff shortages due to influenza illness. As strategies to address strain, respondents reported the use of new protocols, new vaccination policies, additional staffing, suspected-influenza treatment areas, and more frequent hospital administration meetings. Many hospitals reported increased diversion time. Despite experiencing high levels of strain, some hospitals reported no changes to their future influenza preparation plans. Conclusion Acute care hospitals experienced significant strain as a result of the 2017–2018 influenza season. Hospitals implemented a range of immediate responses to seasonal influenza, but generally did not report future planning specific to influenza. Disclosures All authors: No reported disclosures.
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Lateef, Tarannum, Sonja Swanson, Lihong Cui, Karin Nelson, Erin Nakamura, and Kathleen Merikangas. "Headaches and sleep problems among adults in the United States: Findings from the National Comorbidity Survey–Replication Study." Cephalalgia 31, no. 6 (January 10, 2011): 648–53. http://dx.doi.org/10.1177/0333102410390395.
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Background: Several studies have demonstrated an association between headache and disturbed sleep. None have examined this association across the headache spectrum. Our goal was to determine whether migraine and migraine with aura differ from nonmigraine headache in terms of associated insomnia complaints or severity of sleep problems. Methods: A probability sample of US adults was used. A structured interview administered by trained interviewers was used. Diagnostic criteria for migraine and migraine with aura were based on the International Headache Society classification. The presence or absence of four forms of sleep disturbance associated with an insomnia diagnosis was ascertained. Results: There was a significant association between frequent severe headache, including migraine with and without aura, and disordered sleep. Adults with headache reported more frequently difficulty initiating sleep (odds ratio [confidence interval] = 2.0 [1.6–2.5]), difficulty staying asleep (2.5 [2.1–3]), early morning awakening (2.0 [1.7–2.5]) and daytime fatigue (2.6 [2.2–3.2]) and also were more than twice as likely to report three or more of these symptoms(2.5 [2–3.1]) compared to the individuals without headache. Discussion: Adults with severe headache are at significantly higher risk of also suffering from sleep problems, when compared with the general population, regardless of specific headache type. Optimal treatment of headache must include investigation for sleep disorders and vice versa.
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Riley, Nyree, Dana Alhasan, W. Braxton Jackson, and Chandra Jackson. "534 Food Insecurity and Sleep Health by Race/Ethnicity and Age Group in the United States." Sleep 44, Supplement_2 (May 1, 2021): A211. http://dx.doi.org/10.1093/sleep/zsab072.532.
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Abstract Introduction Food insecurity may influence sleep through poor mental health (e.g., depression) and immune system suppression. Although prior studies have found food insecurity to be associated with poor sleep, few studies have investigated the food security-sleep association among racially/ethnically diverse participants and with multiple sleep dimensions. Methods Using National Health Interview Survey data, we examined overall, age-, sex/gender-, and racial/ethnic-specific associations between food insecurity and sleep health. Food security was categorized as very low, low, marginal, and high. Sleep duration was categorized as very short (<6 hours), short (<7 hours), recommended (7–9 hours), and long (≥9 hours). Sleep disturbances included trouble falling and staying asleep, insomnia symptoms, waking up feeling unrested, and using sleep medication (all ≥3 days/times in the previous week). Adjusting for sociodemographic characteristics and other confounders, we used Poisson regression with robust variance to estimate prevalence ratios (PRs) and 95% confidence intervals (95% CI) for sleep dimensions by very low, low, and marginal vs. high food security. Results The 177,435 participants’ mean age was 47.2±0.1 years, 52.0% were women, 68.4% were Non-Hispanic (NH)-White. Among individuals reporting very low food security, 75.4% had an annual income of <$35,000 and 60.3% were ≥50 years old. After adjustment, very low vs. high food security was associated with a higher prevalence of very short (PR=2.61 [95%CI: 2.44–2.80]) and short (PR=1.66 [95% CI: 1.60–1.72]) sleep duration. Very low vs. high food security was associated with both trouble falling asleep (PR=2.21 [95% CI: 2.12–2.30]) and trouble staying asleep (PR=1.98 [95% CI: 1.91–2.06]). Very low vs. high food security was associated with higher prevalence of very short sleep duration among Asians (PR=3.64 [95% CI: 2.67–4.97]), Whites (PR=2.73 [95% CI: 2.50–2.99]), Blacks (PR=2.03 [95% CI: 1.80–2.31]), and Hispanic/Latinxs (PR=2.65 [95% CI: 2.30–3.07]). Conclusion Food insecurity was associated with poor sleep in a diverse sample of the US population. Support (if any):
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Chastain, Ashley, Monika Pogorzelska-Maziarz, Patricia Stone, and Jingjing Shang. "2447. Impact of Agency-Level Policies and Priorities upon Infection Prevention and Control in the Home Environment: Perspectives of Home Health Staff." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S846. http://dx.doi.org/10.1093/ofid/ofz360.2125.
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Abstract Background Infection prevention and control (IPC) is becoming a national priority in home healthcare (HHC) industry. However, little is known about the impact of agency-level policies and priorities upon IPC practices in the home environment. This qualitative study aimed to explore: 1) how home health agencies (HHA) are implementing IPC policies, and 2) perspectives of HHC staff on agency-level IPC policies and priorities and how they impact patient care. Methods From March to November 2018, we recruited staff from HHAs across the United States to participate in in-depth, telephone interviews. HHAs were purposively sampled based on high or low Quality of Patient Care star rating and other agency characteristics from 2016 Provider of Services and Home Health Compare data. Interviews were conducted with 41 staff from 13 HHAs, including administrators, IPC and quality improvement personnel, registered nurses and home health aides. Interview guides were tailored toward the role of the interviewee. Interview transcripts were coded and themes were identified using content analysis. Results Themes included: 1) “Handwashing is our priority”; 2) Innovative approaches to care coordination and IPC; (3) Monitoring staff compliance; and, (4) Opportunities for improvement. Almost all HHC staff described that handwashing was a primary focus of IPC policies and staff education at their agencies. Some staff depicted creative ways that their agency was coordinating patient care among staff who were not always in the office, and also unique approaches to educating staff about IPC policies and practices. Administrators and managers explained the ways that they monitored staff compliance around IPC policies, while nurses and aides described how the monitoring reminded them about proper procedures. Finally, HHC staff mentioned various ways in which care coordination, staff education and compliance could be improved at their agencies; for example, more frequent supervisory visits were perceived as a way to improve compliance with agency policies and practices. Conclusion This study increases our understanding of the impact that agency-level IPC policies and practices have upon HHC staff and patient care, in addition to specific approaches to care coordination, staff education and compliance monitoring. Disclosures All authors: No reported disclosures.
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Zheng, Xin, and Changchuan Jiang. "2736. Insurance Disparity in United States Cancer Survivors’ Influenza Vaccination Rates: A Trend Study from NHIS 2005–2017." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S963. http://dx.doi.org/10.1093/ofid/ofz360.2414.
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Abstract Background Patients with underlying cancer often have suppressed immunity from disease process and cancer therapy, making this population particularly vulnerable to influenza. Few studies have investigated the overall flu vaccination rates; however, little is known regarding the trend of vaccination rates in US cancer survivors and how it varied by individuals’ insurance coverage. Methods We conducted a retrospective cross-sectional study to evaluate the temporal trend of flu vaccination rates using the National Health Interview Survey from 2005 through 2017. Adult cancer survivors (n = 24,381) were included in the analysis. The outcomes were self-reported flu vaccination during the past 12 months with either inactivated or live attenuated nasal vaccine. Insurance coverage was categorized into private (age ≤65), other coverage (age ≤65), uninsured (age ≤65), Medicare and private (age > 65), and other coverage (age > 65). We combined every 2 years data to improve statistical power in the subgroup analysis. Weighted analyses were performed with SAS 9.4 to account for the complex design and NCI-Joinpoint 4.7 was used for joinpoint regression in the trend analysis. Results The overall cancer survivors’ flu vaccination rates improved from 45% in 2005 to 63% in 2017, whereas the cancer-free group improved from 18% in 2005 to 41% in 2017. With cancer survivors, influenza vaccination rates varied remarkably by insurance status (P < 0.001). Elderly survivors (age 65+) with any type of insurance consistently had higher flu vaccination rates than survivors younger than 65 (averaging 70% vs. 40%). For cancer patients age 65 or younger, whether insured or not, the overall flu vaccination rates had improved since 2005. However, for the subgroup who had coverage but not with private insurance, the vaccination rates had been declining since 2012 (50% in 2012/2013 to 45% in 2016/2017). Conclusion Despite the overall increase of flu vaccination rates in both cancer survivors and cancer-free participants since 2005, the growth rate has plateaued since 2015. This is likely related to shifts in healthcare law on the national level. Such impact is particularly significant in cancer patients who are younger and do not have private insurance coverage. Such vulnerable and underserved population will need more resources to help improve their influenza vaccination rate. Disclosures All authors: No reported disclosures.
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Suchy-Dicey, Astrid M., Dean Shibata, Lyle G. Best, Steven P. Verney, William T. Longstreth, Jr., Elisa T. Lee, Peter M. Okin, et al. "Cranial Magnetic Resonance Imaging in Elderly American Indians: Design, Methods, and Implementation of the Cerebrovascular Disease and Its Consequences in American Indians Study." Neuroepidemiology 47, no. 2 (2016): 67–75. http://dx.doi.org/10.1159/000443277.
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The Cerebrovascular Disease and its Consequences in American Indians (CDCAI) Study recruited surviving members of a 20-year, longitudinal, population-based cohort of American Indians focused on cardiovascular disease, its risk factors, and its consequences. The goal of the CDCAI Study is to characterize the burden, risk factors, and manifestations of vascular brain injury identified on cranial MRI. The CDCAI Study investigators enrolled 1,033 participants aged 60 and older from 11 American Indian communities and tribes in the Northern Plains, Southern Plains, and Southwestern United States. In addition to cranial MRI performed according to standardized protocols, participants underwent extensive medical interview, clinical examination, neurocognitive testing, physical function evaluation, electrocardiogram, and provided blood and urine specimens. Participants also self-administered questionnaires covering demographics, quality of life, and medical history. This report describes the design, implementation, and some of the unique challenges of this study and data collection.
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Brucker, Debra L., and Derek Nord. "Food Insecurity Among Young Adults With Intellectual and Developmental Disabilities in the United States: Evidence From the National Health Interview Survey." American Journal on Intellectual and Developmental Disabilities 121, no. 6 (November 1, 2016): 520–32. http://dx.doi.org/10.1352/1944-7558-121.6.520.
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Abstract People with intellectual or developmental disabilities (IDD) face higher levels of poverty than others, which can lead to concerns regarding areas of well-being, such as food security. Young adults with IDD who are, in many cases, transitioning from the system of educational, health care, and income supports of their youth into the adult world may be particularly vulnerable. Using pooled data from the 2011–2014 National Health Interview Survey, we find that young adults with IDD have significantly higher levels of food insecurity than young adults without disabilities, even when controlling for poverty. Young adults with IDD who are living in low-income households are not significantly more likely to participate in the Supplemental Nutrition Assistance Program (SNAP) than young adults without disabilities who are also living in low-income households. Although our results suggest that SNAP is effectively reaching many young adults with IDD in need of nutrition assistance, further research is needed to determine the specific effects of food insecurity and SNAP participation on overall economic and health outcomes for this population.
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Mantsios, Andrea R., Miranda Murray, Tahilin Sanchez Karver, Wendy Davis, David Margolis, Princy Kumar, Susan Swindells, et al. "2497. Women’s Perspectives on and Experiences with Long-acting Injectable Anti-retroviral Therapy in the United States and Spain: the Potential Role of Gender in Patient Preferences." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S866. http://dx.doi.org/10.1093/ofid/ofz360.2175.
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Abstract Background Adherence to antiretroviral therapy (ART) to treat HIV remains a critical global health challenge given its relationship with individual health outcomes and population-level transmission. Given barriers associated with oral ART adherence, and considerations of patients’ preferences, long-acting injectable (LA) ART (cabotegravir + rilpivirine) is under development and has been shown to be non-inferior to daily oral ART in Phase III trials. While most of the trial participants have been men, as LA ART gets closer to becoming available for routine clinical use, it is critical to understand how this option is perceived by women. Methods We conducted in-depth interviews with 67 individuals, 53 people living with HIV (PLHIV) and 14 healthcare providers, in 11 sites in the United States and Spain participating in Phase III LA ART trials (ATLAS, ATLAS 2-M and FLAIR). Twenty percent (10/53) of trial participants interviewed were women. Interviews explored patient and provider perspectives and experiences with LA ART, and appropriate candidates and recommendations to support use. Interviews were audio-recorded, transcribed and coded using thematic content analysis. Results Overall, several salient themes emerged regarding participant’s generally positive experiences transitioning from daily oral ART to injectable ART including: the importance of the clinical efficacy of LA ART, the ability to learn to manage injection side-effects over time, and the “freedom” reportedly afforded by LA ART logistically and psychosocially. Women interviewed shared many of the aforementioned positive perceptions of LA ART but also had some unique perspectives. Female participants discussed how LA ART was easier to integrate into their daily lives including managing their multiple roles and responsibilities, which often involved working full-time and taking care of themselves as well as their family and children. Conclusion Similar to all participants, female participants had generally positive views of LA ART. However, the gendered nature of their daily lives also led to some unique perspectives on why and how they were satisfied with LA ART that merits further exploration in future research. Disclosures All authors: No reported disclosures.
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Kavanaugh, Melinda S., Chi C. Cho, Megan Howard, Dominic Fee, and Paul E. Barkhaus. "US data on children and youth caregivers in amyotrophic lateral sclerosis." Neurology 94, no. 14 (March 18, 2020): e1452-e1459. http://dx.doi.org/10.1212/wnl.0000000000009217.
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ObjectiveAn estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS.MethodsOnline adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used.ResultsYouth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud.ConclusionYouth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.
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Mszar, Reed, Shiwani Mahajan, Javier Valero-Elizondo, Tamer Yahya, Richa Sharma, Gowtham R. Grandhi, Rohan Khera, et al. "Association Between Sociodemographic Determinants and Disparities in Stroke Symptom Awareness Among US Young Adults." Stroke 51, no. 12 (December 2020): 3552–61. http://dx.doi.org/10.1161/strokeaha.120.031137.
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Background and Purpose: Despite declining stroke rates in the general population, stroke incidence and hospitalizations are rising among younger individuals. Awareness of and prompt response to stroke symptoms are crucial components of a timely diagnosis and disease management. We assessed awareness of stroke symptoms and response to a perceived stroke among young adults in the United States. Methods: Using data from the 2017 National Health Interview Survey, we assessed awareness of 5 common stroke symptoms and the knowledge of planned response (ie, calling emergency medical services) among young adults (<45 years) across diverse sociodemographic groups. Common stroke symptoms included: (1) numbness of face/arm/leg, (2) confusion/trouble speaking, (3) difficulty walking/dizziness/loss of balance, (4) trouble seeing in one/both eyes, and (5) severe headache. Results: Our study population included 24 769 adults, of which 9844 (39.7%) were young adults who were included in our primary analysis, and represented 107.2 million US young adults (mean age 31.3 [±7.5] years, 50.6% women, and 62.2% non-Hispanic White). Overall, 2718 young adults (28.9%) were not aware of all 5 stroke symptoms, whereas 242 individuals (2.7%; representing 2.9 million young adults in the United States) were not aware of a single symptom. After adjusting for confounders, Hispanic ethnicity (odds ratio, 1.96 [95% CI, 1.17–3.28]), non-US born immigration status (odds ratio, 2.02 [95% CI, 1.31–3.11]), and lower education level (odds ratio, 2.77 [95% CI, 1.76–4.35]), were significantly associated with lack of symptom awareness. Individuals with 5 high-risk characteristics (non-White, non-US born, low income, uninsured, and high school educated or lower) had nearly a 4-fold higher odds of not being aware of all symptoms (odds ratio, 3.70 [95% CI, 2.43–5.62]). Conclusions: Based on data from the National Health Interview Survey, a large proportion of young adults may not be aware of stroke symptoms. Certain sociodemographic subgroups with decreased awareness may benefit from focused public health interventions.
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Hartung, Daniel M., Lindsey Alley, Kirbee A. Johnston, and Dennis N. Bourdette. "Qualitative study on the price of drugs for multiple sclerosis." Neurology 94, no. 4 (November 25, 2019): e368-e375. http://dx.doi.org/10.1212/wnl.0000000000008653.
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ObjectiveTo describe pricing decisions, justifications, and attitudes among current and former biotech industry executives for companies that manufacture multiple sclerosis disease-modifying therapies.MethodsFour leaders in biotech who have been directly involved in multiple sclerosis disease-modifying therapy pricing or marketing volunteered to participate in 30-minute semistructured interviews conducted via telephone. An expert in qualitative methods moderated and analyzed the interviews alongside the principal investigator. Brief, preinterview online surveys were also administered to provide additional context and insight for discussion. Interviews were audio-recorded and professionally transcribed.ResultsParticipants consistently stated that initial price decisions were dictated by the price of existing competitors in the market. Revenue maximization and corporate growth were drivers of price escalations in the absence of continued market penetration. Lower revenue predictions outside the United States also informed pricing strategies. The growing complexity and clout of drug distribution and supply channels were also cited as contributing factors. Although decisions to raise prices were motivated by the need to attract investment for future innovation, recouping drug-specific research and development costs as a justification was not strongly endorsed as having a significant influence on pricing decisions.ConclusionsContrary to prevailing narratives that underscore drug development costs, findings from our interviews suggest that the existing price ecosystem, overall corporate growth, international pricing disparities, and supply chain–related distortions may play a more central role in drug pricing decision.
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Rha, Brian, Angela P. Campbell, Darius McDaniel, Rangaraj Selvarangan, Natasha Halasa, Janet Englund, Julie A. Boom, et al. "751. Acute Respiratory Illness Hospitalizations Among Young Children: Multi-Center Viral Surveillance Network, United States, 2015–2016." Open Forum Infectious Diseases 5, suppl_1 (November 2018): S270. http://dx.doi.org/10.1093/ofid/ofy210.758.
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Abstract Background Viral infections are a significant cause of severe acute respiratory illnesses (ARI) in young children. Understanding the current epidemiology of these viruses is important for informing treatment and prevention measures. We describe the New Vaccine Surveillance Network (NVSN) and report preliminary results from 2015 to 2016. Methods Prospective active surveillance for hospitalized ARI was conducted from November 1, 2015 to June 30, 2016 among children <5 years of age at seven pediatric hospital sites (figure) using a broad case definition based on admission diagnoses. Parent interviews and medical chart reviews were performed, and mid-turbinate nasal and throat flocked swabs and/or tracheal aspirates were tested for adenovirus, human metapneumovirus (HMPV), influenza, parainfluenza viruses (PIV) 1–3, respiratory syncytial virus (RSV), and rhinovirus/enterovirus using molecular diagnostic assays at each site. Asymptomatic controls <5 years of age were also enrolled. Results Among 2,974 hospitalized children with ARI whose specimens were tested for viruses, 2,228 (75%) were <2 years old, with 745 (25%) 0–2 months, and 309 (10%) 3–5 months old. The majority were male (58%; n = 1,732) and 63% (n = 1,093) had no documented comorbid conditions. The median length of stay was 2 days; 1,683 (57%) received supplemental oxygen, 435 (15%) were admitted to intensive care, 95 (3%) required mechanical ventilation, and 1 (<1%) died. Viruses were detected in 2,242 (75%) children with ARI, with >1 virus detected in 234 (8%). RSV was detected in 1,039 (35%) children with ARI, HMPV in 245 (8%), influenza in 104 (4%), and PIV-1, PIV-2, and PIV-3 in 49 (2%), 2 (<1%), and 78 (3%), respectively. Rhinovirus/enterovirus was detected in 849 (29%) and adenovirus in 118 (4%) children with ARI, but were also detected in 18% (n = 227) and 5% (n = 60), respectively, of the 1,243 controls tested; the other viruses were more rarely detected in controls. Conclusion During the 2015–2016 season, viral detections were common in young children hospitalized for ARI at seven US sites. NVSN combines clinical data with current molecular laboratory techniques to describe respiratory virus epidemiology in cases of hospitalized pediatric ARI in order to inform current and future prevention, treatment, and healthcare utilization measures. Disclosures N. Halasa, Sanofi Pasteur: Investigator, Research support. GSK: Consultant, Consulting fee. Moderna: Consultant, Consulting fee. J. Englund, Gilead: Consultant and Investigator, Consulting fee and Research support. Novavax: Investigator, Research support. GlaxoSmithKline: Investigator, Research support. Alios: Investigator, Research support. MedImmune: Investigator, Research support. J. V. Williams, Quidel: Board Member, Consulting fee. GlaxoSmithKline: Consultant, Consulting fee.
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Ogokeh, Constance E., Manish Patel, Joana Y. Lively, Mary A. Staat, Geoffrey A. Weinberg, Julie A. Boom, Janet A. Englund, et al. "2738. Influenza Vaccination During Pregnancy Among Mothers of Infants with Acute Respiratory Illness, United States, 2016–2018." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S963—S964. http://dx.doi.org/10.1093/ofid/ofz360.2416.
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Abstract Background Influenza vaccination has been shown to reduce influenza risk in pregnant women and their infants who are not yet age-eligible for vaccine. Ascertainment of vaccination history is important for vaccine safety and effectiveness evaluations. Our goals were to (a) determine coverage, location, and timing of maternal influenza vaccination and (b) compare a subset of self-reported influenza vaccinations with documented vaccine records. Methods We enrolled children < 18 years. with acute respiratory illness in 7 pediatric hospitals and emergency departments in the New Vaccine Surveillance Network from December 1, 2016 to October 31, 2018. We interviewed all mothers of enrolled infants < 1 year, and obtained mother’s influenza vaccine information while pregnant. As an option, sites obtained maternal influenza vaccine records from reported sources (e.g., registries, provider records, pharmacies). Results Among 5,458 mothers, 2,944 (54%) self-reported receiving influenza vaccine during pregnancy (57% in 2016–2017; 51% in 2017–2018), varying from 49% to 74% by site. Among self-reported vaccinees, 17%, 36%, and 47% received vaccine during their first, second, and third trimester, respectively. Most women (76%) were vaccinated at their OB/GYN or midwife office, 7% at their primary care provider, 7% at their workplace, and 5% at a retail pharmacy. Among 1,338 infants < 6 months. during early influenza season (i.e., born from June to August) and thus ineligible for vaccination, only 46% of mothers reported receiving vaccine during pregnancy (42% reported not receiving it, 12% were unsure). Of 2,242 women for whom vaccine verification was attempted, 1,491 (67%) self-reported receiving influenza vaccine during pregnancy; of those, documentation of vaccine receipt was found for 901 (60%). Conclusion Influenza vaccination coverage among pregnant women was suboptimal, potentially increasing the risk of influenza in unvaccinated pregnant women. Infants born to unvaccinated women, particularly those born from June to August, may also be at higher risk since they are not age-eligible to receive vaccine before influenza season. The optimal approach to ascertainment of maternal vaccination history with accuracy and completeness merits further investigation. Disclosures All authors: No reported disclosures.
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Gaston, S. A., E. E. Martinez-Miller, S. Nguyen-Rodriguez, A. Aiello, J. McGrath, W. Jackson, A. Nápoles, E. J. Pérez-Stable, and C. L. Jackson. "0361 Birthplace Moderates Racial/Ethnic Disparities in Multiple Sleep Characteristics Among Non-Hispanic Whites and Hispanic/Latino Heritage Groups in the United States." Sleep 43, Supplement_1 (April 2020): A138. http://dx.doi.org/10.1093/sleep/zsaa056.358.
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Abstract Introduction Sleep duration disparities by Hispanic/Latino heritage exist; however, few studies have additionally investigated sleep quality disparities by heritage and birthplace, nor have studies compared foreign-born to US-born Non-Hispanic Whites (NHWs). Methods Using pooled 2004-2017 National Health Interview Survey data, we investigated whether sleep disparities varied by birthplace among adult NHWs and Hispanic/Latino heritage groups. Adjusting for sociodemographic and behavioral/clinical characteristics, survey-weighted Poisson regressions with robust variance estimated prevalence ratios (PRs) and 95% confidence intervals (CIs) of self-reported sleep characteristics. Sleep characteristics were compared among foreign-born NHWs and Hispanic/Latino heritage groups vs. US-born NHWs. Sleep characteristics were also compared across Hispanic/Latino heritage groups vs. foreign-born NHWs. Results Among 254,699 participants (Meanage±SE: 47±0.9 years; 49% female), 81% self-identified as NHW (n=207,154), 12% Mexican (n=30,100), 2% Puerto Rican n=5,077), 1% Cuban(n=2,518), 1% Dominican (n=1,658), and 3% Central/South American (n=8,162). Compared to US-born NHWs, foreign-born NHWs were more likely to report >9-hours sleep duration (PR=1.11[95% CI: 1.01-1.21]) and poor sleep quality (e.g., PRtrouble staying asleep=1.27[1.17-1.37]), and US-born Mexicans were no more likely to report shorter sleep duration while foreign-born Mexicans were less likely (PR<6-hours=0.52[0.47-0.57], PR6-<7-hours=0.72[0.68-0.76]). Although US-born and foreign-born Mexicans had lower prevalence of poor sleep quality compared to US-born NHWs, PRs were lowest for foreign-born Mexicans. Compared to foreign-born NHWs, US-born Mexicans were more likely to report shorter sleep duration, but foreign-born Mexicans were no more likely. Regardless of birthplace, Puerto Ricans were more likely (e.g., PR<6-hours=1.37[1.24-1.60]) and Cubans were less likely (e.g., PR<6-hours=0.81[0.68-0.96]) to report shorter sleep duration vs. US-born NHWs. Compared to US-born NHWs, Dominicans reported better sleep duration and quality. Sleep duration and quality did not differ among Dominicans vs. foreign-born NHWs. Conclusion Sleep disparities varied by birthplace and Hispanic/Latino heritage. Birthplace of both NHWs and racial/ethnic minority groups should be considered in disparities research. Support This work was funded by the Intramural Program at the National Institutes of Health (NIH), National Institute of Environmental Health Sciences (NIEHS, Z1AES103325-01) and the Division of Intramural Research, National Institute on Minority Health and Health Disparities.
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Tobolowsky, Farrell A., Cindy R. Friedman, Matthew Ryan, Meseret Birhane, Jessica Chen, Hattie E. Webb, Rachel A. Beukelman, et al. "731. The Emergence of Mobile Colistin Resistance (mcr) Genes among Enteric Pathogens in the United States — 2008–2019." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S416. http://dx.doi.org/10.1093/ofid/ofaa439.923.
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Abstract Background Colistin, once seldom used clinically, has resurged as a “last resort antibiotic” for multidrug-resistant infections and is still used in animal agriculture in countries outside the United States. During 2015–2018, 8 plasmid-mediated, mobile colistin resistance genes (mcr-1 to mcr-8) were each found in one or more clinical, animal, food, and environmental bacterial sources. We describe the epidemiology of mcr genes in enteric pathogens from US patients. Methods State public health laboratories have performed whole-genome sequencing on enteric bacterial pathogens since 2015, and some have sequenced older isolates. We screened sequences of isolates collected through 2019 for mcr genes using a workflow based on ResFinder 3.0. State health officials interviewed patients for clinical and epidemiologic information, including demographics, hospitalization, and travel history. Results We identified 41 patient isolates with mcr genes collected from stool, urine, and blood during 2008–2019. These included 37 nontyphoidal Salmonella (31 mcr-1, 6 mcr-3), 2 Vibrio (both mcr-4), and 2 Shiga toxin-producing E. coli (both mcr-1). The median patient age was 34 years (interquartile range: 24–54) and 54% were female. Of 23 patients with comorbidity data, 2 (9%) had immunodeficiency, 2 (9%) had past abdominal surgeries, and 1 (4%) had cancer. Patients sought care at doctor’s offices (46%), emergency rooms (35%), and urgent care clinics (19%); 24% were hospitalized for the enteric illness. None died. Among 36 with information, 35 (97%) travelled internationally in the 12 months before illness; 30 (94%) of 32 traveled in the 7 days before. Only 4 (15%) of 27 had contact with a healthcare setting during their trip; common destinations were the Dominican Republic (35%), Vietnam (24%), Thailand (15%), and China (12%). Conclusion The data strongly suggest that many patients acquired infection abroad. Nearly one in four were hospitalized, raising concerns that plasmids carrying mcr genes could spread among patients hospitalized with infections caused by multidrug-resistant pathogens for which colistin is the only available treatment. The acquisition of mcr genes by US travelers highlights the need for a global approach to antimicrobial stewardship. Disclosures All Authors: No reported disclosures
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Haston, Julia C., Shikha Garg, Angela P. Campbell, Jill Ferdinands, Alissa O’Halloran, Charisse N. Cummings, Pam Daily Kirley, et al. "2741. Seasonal Influenza Vaccine Timing in Children and Adults Hospitalized with Influenza in the United States, FluSurv-NET, 2013–2017." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S964—S965. http://dx.doi.org/10.1093/ofid/ofz360.2418.
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Abstract Background Seasonal influenza vaccine may attenuate disease severity among people infected with influenza despite vaccination, but vaccine effectiveness may decrease with increasing time between vaccination and infection. Patient characteristics may play a role in the timing of vaccine receipt. Methods We used data from the Influenza Hospitalization Surveillance Network (FluSurv-NET) and included patients ≥ 9 years hospitalized with laboratory-confirmed influenza during October 1–April 30 of influenza seasons 2013–2014 through 2016–2017 who received seasonal influenza vaccine ≥ 14 days prior to admission. Vaccine history was obtained from vaccine registries, medical charts, and patient interviews. We defined “early vaccination” as vaccine receipt before October 15 and “late vaccination” as receipt after (date selected using typical season onset and median vaccination dates). Early and late groups were compared using Chi-square or Fisher exact tests. Results Among 21,751 vaccinated patients, 61% received vaccine before October 15, and distribution of vaccination date was similar across seasons (figure). Vaccination occurred earlier with increasing age (45% were vaccinated early among those 9–17 years but 65% in those ≥ 80 years, P < 0.01). White non-Hispanic patients were more likely to receive vaccine early compared with black non-Hispanic and Hispanic patients (63% vs. 55% and 54%; P < 0.01). Those with metabolic disorders, cardiovascular disease, kidney disease, and cancer were vaccinated earlier whereas those with HIV and liver disease were vaccinated later. Vaccine timing also varied by state (P < 0.01) but not by sex. Conclusion Among influenza-vaccinated older children and adults hospitalized with influenza, older age, white race, and certain medical conditions were associated with early receipt of influenza vaccination in unadjusted analysis. This may be due to frequent healthcare encounters and targeted public health strategies in high-risk groups. Understanding how timing of vaccine receipt varies among populations can provide insights into variables that must be controlled for in studying possible vaccine effectiveness waning and attenuation of disease among those who are infected despite vaccination. Disclosures All authors: No reported disclosures.
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Alyanak, Elif, Manjusha Gaglani, Emily T. Martin, Arnold S. Monto, Don Middleton, Fernanda P. Silveira, Richard Zimmerman, H. Keipp Talbot, and Jill M. Ferdinands. "995. Effectiveness of Influenza Vaccine for Prevention of Influenza-Associated Hospitalizations Among High-Risk Adults in the United States, 2015–2016." Open Forum Infectious Diseases 5, suppl_1 (November 2018): S296. http://dx.doi.org/10.1093/ofid/ofy210.832.
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Abstract Background Individuals with cardiopulmonary and other chronic conditions are at increased risk for severe complications of influenza. Few studies have examined influenza vaccine effectiveness (VE) in high-risk groups. We evaluated VE against influenza-associated hospitalization among adults with specific high-risk conditions. Methods Adults hospitalized with acute respiratory illness (ARI) during the 2015–2016 influenza season were enrolled at eight hospitals participating in the US Hospitalized Adult Influenza Vaccine Effectiveness Network (HAIVEN) study. Respiratory specimens were tested for influenza by reverse transcription PCR. Measures of illness severity, underlying health status, and vaccination were obtained from medical records and enrollment interviews. The presence of high-risk conditions was determined from clinical codes assigned to prior year medical encounters. We estimated VE using a test-negative design as (1 − adjusted odds ratio), comparing odds of PCR-confirmed influenza among vaccinated patients vs. unvaccinated controls. Multivariate logistic regression was adjusted for age, sex, and other factors, stratifying by chronic conditions. Results Of 1,467 adults hospitalized with ARI, 236 (16%) had PCR-confirmed influenza; 180 (78%) were A(H1N1)pdm09. In all, 1,358 (93%) had ≥1 high-risk medical condition, and 1,026 (70%) had ≥3 conditions. Cardiovascular (n = 835), metabolic (including diabetes) (n = 773) and lung conditions (n = 692) were most common (figure). Patients with ≥1 high-risk conditions were more likely to be vaccinated (70%) vs. patients not at high risk (31%, P < 0.001). Among all patients, VE against any influenza-associated hospitalization was 50% (95% CI: 31–63). VE was similarly high among patients with neurologic (VE = 64%, 95% CI: 26–83), metabolic (VE = 55%, 95% CI: 30–71), and cardiovascular (VE = 53%, 95% CI: 27–69) conditions, though lower for patients with immunosuppression and malignancy (VE = 20%, 95% CI: −42–54). Conclusion Vaccination significantly reduced risk of influenza hospitalization among adults with the most prevalent high-risk cardiovascular, metabolic, and lung conditions. Results support the benefit of vaccinating adults with existing specific chronic conditions. Disclosures H. K. Talbot, sanofi pasteur: Investigator, Research grant. Gilead: Investigator, Research grant. MedImmune: Investigator, Research grant. Vaxinnate: Safety Board, none. Seqirus: Safety Board, none.
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Pierson, Doris, Vaidehi Mujumdar, Brittany Briceño, Elaina Cummer, Kshipra Hemal, Shannon Golden, Kimberly Wiseman, Amanda Tanner, and Katherine R. Schafer. "1316. Gathering Trauma Narratives: A Qualitative Study on the Impact of Traumas on People Living with HIV (PLWH)." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S475. http://dx.doi.org/10.1093/ofid/ofz360.1179.
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Abstract Background Trauma—emotional, physical, and psychological—is common and associated with increased risk behaviors, low rates of care engagement and viral suppression, and overall poor health outcomes for people living with HIV (PLWH). In the United States, there are limited data on how trauma affects reproductive health beliefs for PLWH and even less data on HIV providers’ understanding and consideration of these experiences in their approach to patients. Methods Fifteen semi-structured interviews were conducted with PLWH and nine semi-structured interviews were conducted with HIV care and service providers at an academic medical center in the Southeastern United States. Transcripts were analyzed using thematic analysis. Each transcript was coded by two investigators and discussed to ensure consensus. Results Participants’ narratives described diverse traumas, including sexual abuse (n = 6), the loss of a loved one (n = 8), and personal illness (n = 7). Types of trauma shared with providers included physical, sexual, illness, loss, and psychological. For patients, trauma was both a motivation for having children and a reason to stop having children. Providers perceived a variety of effects of trauma on both sexual behaviors and reproductive intentions. Reproductive counseling by HIV care providers (n = 5) focused on maintaining a healthy pregnancy and less on reproductive intentions prior to pregnancy. Reproductive discussions with pregnant female patients typically centered on reducing the risk of transmission in utero (including the importance of medication adherence to maintain viral suppression), what will happen during delivery, and breastfeeding risks. Reproductive discussions with males typically centered on preventing infection or re-infection of the mother. Conclusion PLWH interpret their trauma experiences differently, particularly when considering reproduction. Providers may not incorporate this information in counseling around reproductive health, highlighting the need fora trauma-informed healthcare practice that promotes awareness, education on the effect of past traumas on health, and access to appropriate resources. Disclosures All authors: No reported disclosures.
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Kerber, Kevin A., Jane Forman, Laura Damschroder, Steven A. Telian, Angela Fagerlin, Patricia Johnson, Devin L. Brown, Lawrence C. An, Lewis B. Morgenstern, and William J. Meurer. "Barriers and facilitators to ED physician use of the test and treatment for BPPV." Neurology: Clinical Practice 7, no. 3 (May 10, 2017): 214–24. http://dx.doi.org/10.1212/cpj.0000000000000366.
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AbstractBackground:The test and treatment for benign paroxysmal positional vertigo (BPPV) are evidence-based practices supported by clinical guideline statements. Yet these practices are underutilized in the emergency department (ED) and interventions to promote their use are needed. To inform the development of an intervention, we interviewed ED physicians to explore barriers and facilitators to the current use of the Dix-Hallpike test (DHT) and the canalith repositioning maneuver (CRM).Methods:We conducted semi-structured in-person interviews with ED physicians who were recruited at annual ED society meetings in the United States. We analyzed data thematically using qualitative content analysis methods.Results:Based on 50 interviews with ED physicians, barriers that contributed to infrequent use of DHT/CRM that emerged were (1) prior negative experiences or forgetting how to perform them and (2) reliance on the history of present illness to identify BPPV, or using the DHT but misattributing patterns of nystagmus. Based on participants' responses, the principal facilitator of DHT/CRM use was prior positive experiences using these, even if infrequent. When asked which clinical supports would facilitate more frequent use of DHT/CRM, participants agreed supports needed to be brief, readily accessible, and easy to use, and to include well-annotated video examples.Conclusions:Interventions to promote the use of the DHT/CRM in the ED need to overcome prior negative experiences with the DHT/CRM, overreliance on the history of present illness, and the underuse and misattribution of patterns of nystagmus. Future resources need to be sensitive to provider preferences for succinct information and video examples.
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Gish, Robert, and Vincent Streva. "1066. Immune Escape Mutant Detection Using Commercially Available Methods for Hepatitis B Surface Antigen Serological Testing." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S562. http://dx.doi.org/10.1093/ofid/ofaa439.1252.
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Abstract Background Although overall infection rates of Hepatitis B virus (HBV) in the United States (US) remain stable, as many as 2.2 million persons are still chronically infected with Hepatitis B Virus (HBV)1. Persons who inject drugs (PWID) are at a higher risk of HBV infection and since 2009 three states (KY, TN, WV) have reported up to a 114% increase in cases of acute HBV infection due to higher infection rates among a non-Hispanic white populations (30–39 years), and injection drug users2. Hepatitis B vaccination is recommended as primary prevention for adults who are at increased risk for HBV infection, including PWID. However, data from the National Health Interview Survey indicate that hepatitis B vaccination coverage is low among adults in the general population3, and it is likely to be lower among injection drug users. Hepatitis B Surface Antigen (HBsAg) is the first serological marker to appear after HBV exposure and infection; this marker is included in the recommended panel for acute hepatitis diagnosis and accurate detection is necessary for early and accurate diagnosis. Serological testing challenges exist for HBsAg due to the high degree of genetic variability which can further be exacerbated by endogenous and exogenous pressures. The immuno-dominant region may have one or more mutations described as immune escape mutations which can decrease or abrogate HBsAg binding to antibodies used in immunoassays. Although the prevalence of these mutations is not well documented in the United States, international studies have shown that up to 79% of HBV-reactivated patients (vs 3.1% of control patients; p< 0.001) carry HBsAg mutations localized in immune-active HBsAg regions4. Methods A study was conducted using a panel of 10 unique recombinant HBsAg immune escape mutants. Panel members were tested by commercially available HBsAg serological immunoassays. Results It was found that although commercially available HBsAg immunoassays are the primary diagnostic tool for HBV diagnosis, not all HBsAg immune escape mutants are detected, with some method detecting as few as 5 out of 10 of these mutant samples. Figure 1 Conclusion Improvement is needed in commercially available methods for the accurate detection of HBsAg. Disclosures Robert Gish, MD, Abbott (Consultant)AbbVie (Consultant, Advisor or Review Panel member, Speaker’s Bureau)Access Biologicals (Consultant)Antios (Consultant)Arrowhead (Consultant)Bayer (Consultant, Speaker’s Bureau)Bristol Myers (Consultant, Speaker’s Bureau)Dova (Consultant, Speaker’s Bureau)Dynavax (Consultant)Eiger (Consultant, Advisor or Review Panel member)Eisai (Consultant, Speaker’s Bureau)Enyo (Consultant)eStudySite (Consultant, Advisor or Review Panel member)Exelixis (Consultant)Fujifilm/Wako (Consultant)Genentech (Consultant)Genlantis (Consultant)Gilead (Consultant, Advisor or Review Panel member, Speaker’s Bureau)GLG (Consultant)HepaTX (Consultant, Advisor or Review Panel member)HepQuant (Consultant, Advisor or Review Panel member)Intercept (Consultant, Speaker’s Bureau)Ionis (Consultant)Janssen (Consultant)Laboratory for Advanced Medicine (Consultant)Lilly (Consultant)Merck (Consultant)Salix (Consultant, Speaker’s Bureau)Shionogi (Consultant, Speaker’s Bureau)Viking (Consultant)
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Field, Nicholas C., Julie G. Pilitsis, and Alexandra R. Paul. "The Role of Gender in Neurosurgical Residency Applicants’ Letters of Recommendation." Neurosurgery 89, no. 3 (June 15, 2021): 504–8. http://dx.doi.org/10.1093/neuros/nyab223.
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Abstract BACKGROUND Letters of recommendation (LORs) are one of the most important components of the neurosurgical residency application. Studies in other fields and surgical subspecialties have found gender bias. OBJECTIVE To determine whether neurosurgical LORs contain significant linguistic gendered differences. METHODS We performed a retrospective review and linguistic analysis of all LORs submitted on behalf of applicants offered an interview invitation to a single neurosurgical residency program at an academic medical center between 2015-2016 and 2018-2019. RESULTS A total of 599 letters from 156 applicants (120 males and 36 females) were included. Background demographics, including United States Medical Licensing Examination (USMLE) Step 1 score and publications, were not significantly different between applicants. Male faculty authored 93% of all letters. Female faculty were more likely to write letters for female applicants than male applicants (12.1% vs 5.5%, P < .001). Letters for women were significantly longer (334 words vs 277 words, P < .001). Overall, 1754 agentic terms and 854 communal terms were coded. Letters for men contained significantly fewer agentic terms (10.7 vs 13.1, per applicant, P < .01) and communal terms (5.2 vs 6.4, P < .034). This difference, however, is nonsignificant when word count was used as a covariate. Female applicants were more significantly likely to be labeled “Outstanding” (2.4 vs 1.6 mentions per applicant). CONCLUSION Overall, there are more similarities than differences between genders in LORs for neurosurgical applicants. This finding is at odds with what has previously been reported in most other surgical specialties.
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Alegría, Analucía A., Nancy M. Petry, Deborah S. Hasin, Shang-Min Liu, Bridget F. Grant, and Carlos Blanco. "Disordered Gambling Among Racial and Ethnic Groups in the US: Results From the National Epidemiologic Survey on Alcohol and Related Conditions." CNS Spectrums 14, no. 3 (March 2009): 132–43. http://dx.doi.org/10.1017/s1092852900020113.
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ABSTRACTIntroduction: Prior research suggests that racial minority groups in the United States are more vulnerable to develop a gambling disorder than whites. However, no national survey on gambling disorders exists that has focused on ethnic differences.Methods: Analyses of this study were based on the National Epidemiologic Survey on Alcohol and Related Conditions, a large (N=43,093) nationally representative survey of the adult (≥18 years of age) population residing in house-holds during 2001–2002 period. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-Text Revision diagnoses of pathological gambling, mood, anxiety, drug use, and personality disorders were based on the Alcohol Use Disorder and Associated Disabilities Interview Schedule-DSM-IVVersion.Results: Prevalence rates of disordered gambling among blacks (2.2%) and Native/Asian Americans (2.3%) were higher than that of whites (1.2%). Demographic characteristics and psychiatric comorbidity differed among Hispanic, black, and white disordered gamblers. However, all racial and ethnic groups evidenced similarities with respect to symptom patterns, time course, and treatment seeking for pathological gambling.Conclusion: The prevalence of disordered gambling, but not its onset or course of symptoms, varies by racial and ethnic group. These varying prevalence rates may reflect, at least in part, cultural differences in gambling and its acceptability and accessibility. These data may inform the need for targeted prevention strategies for high-risk racial and ethnic groups.
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Lydiard, R. Bruce. "Increased Prevalence of Functional Gastrointestinal Disorders in Panic Disorder: Clinical and Theoretical Implications." CNS Spectrums 10, no. 11 (November 2005): 899–908. http://dx.doi.org/10.1017/s1092852900019878.
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ABSTRACTBackground:Functional gastrointestinal disorders (FGID) are a group of disorders characterized by recurrent gastrointestinal distress for which no structural or biochemical cause can be discerned. Irritable bowel syndrome (IBS) is an FGID estimated to affect 10% to 25% of the United States population. IBS occurs in over 40% of individuals with panic disorder, and in patients with IBS, 25% to 30% have panic disorder, which has led to speculation about possible shared pathophysiology between the two. Less is known about the prevalence of other FGID in individuals with panic disorder.Objective:The purpose of this study was to examine the prevalence of IBS and all the other FGID in patients with current Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) panic disorder.Introduction:We assessed FGIDs in 73 treatment-seeking DSM-IV panic disorder patients via the Diagnostic Interview Questions for Functional Gastrointestinal Disorders and made descriptive comparisons with a large convenience sample from an already-completed United States Household Survey (USHS), which employed the same diagnostic criteria.Results:The prevalence of IBS and other FGIDs in both men and women with panic disorder were substantially higher than in the USHS respondents. Women with panic disorder had significantly more functional chest pain than men, but there was no gender difference in IBS. With the exception of functional anorectal and biliary disorders, the FGID prevalences were comparatively higher in panic disorder versus the USHS respondents.Discussion:This survey supports earlier reports of a high prevalence of IBS in individuals with panic disorder and also suggests that the prevalence of several other FGIDs were comparatively high as well. Methodological limitations precluded direct statistical analysis. It may be that commonly overlapping psychiatric and often-painful FGIDs, and extra-intestinal disorders increase the risk for comorbidity in already-affected individuals via shared pathophysiology. One potential model for which there is some evidence for a role in stress, panic disorder, FGIDs and several extra-intestinal functional conditions is dysregulation of corticotropin-releasing factor function.Conclusion:The prevalence of FGIDs in DSM-IV panic disorder was comparatively higher than in USHS respondent community sample, which used similar FGID diagnostic criteria. The cause for the apparent close association of panic disorder with FGID may represent shared pathophysiology. Increased understanding of the mechanism of the overlap may allow for improved treatment of the significant proportion of the population suffering from comorbid psychiatric and functional medical conditions.
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Ohayon, Maurice M., Maggie McCue, Andrew Krystal, Lambros Chrones, Maelys Touya, Debra Lawrence, Sheetal Patel, and Marie Lise Cote. "A Longitudinal Study to Assess Antidepressant Treatment Patterns and Outcomes in Individuals with Depression in the General Population." CNS Spectrums 26, no. 2 (April 2021): 180. http://dx.doi.org/10.1017/s1092852920002965.
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AbstractStudy ObjectivesDepression is an important cause of disability in the United States (US). The care experience of major depressive disorder (MDD) is highly variable and has only been documented to a limited degree. This study examines the prevalence incidence and treatment patterns for MDD in the US general population.MethodsIn this longitudinal study 2 interview waves were conducted between 2002 and 2015. The initial wave (W1) was carried out with 12,218 individuals from the general population in 8 US states with participants aged 18 years or older. In the second wave (W2) 10,931 of the initial participants agreed to be interviewed again 3 years later; the analyses were carried out for individuals who participated in both interviews (N=10,931). Diagnosis of MDD was confirmed according to Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) criteria.ResultsThe 3-year incidence of MDD was 3.4% (95% CI 3.1%–3.7%). The prevalence of MDD was 5.1% (95% CI 4.7%–5.5%) and 4.2% (95% CI 3.8%–4.6%) in W1 and W2, respectively. The percentages of participants who achieved partial and complete remission were 4.4% (95% CI 4.0%–4.8%) and 3.9% (95% CI 3.5%–4.3%) in W1 compared with 7.9% (95% CI 7.4%–8.4%) and 4.4% (95% CI 4.0%–4.8%) in W2, respectively. The prevalence of MDD was 13.4% and 16.5% in W1 and W2, respectively, when including participants with MDD partial and complete remission episodes. 61.9% of participants with an MDD diagnosis in W1 had at least one associated comorbidity. 41.8% of participants with an MDD diagnosis at W1 still reported significant depressive symptoms at W2. 19.9% of participants in partial remission and 5.5% of participants in complete remission in W1 did not achieve remission in W2. 52.2% and 42.9% of participants with MDD were treated with an antidepressant (AD) in W1 and W2, respectively; selective serotonin reuptake inhibitors (SSRIs) were the most commonly prescribed (34.7% in W1 vs 28.3% in W2). ADs were mainly prescribed by primary care physicians (45.7%) followed by psychiatrists (31.4%), neurologists (2.5%), and other specialties (7.9%). The average duration of treatment was 36.9 (SE 2.4) months. More than one-third of AD users in W1 expressed dissatisfaction with their AD treatment which translated into changes in types of antidepressant in W2.ConclusionDepression affects a sizable part of the general population in the US with a prevalence of MDD at 13.4%–16.5%; yet MDD remains largely undertreated as shown by the finding that only about half (52%) of individuals in this study who met the diagnostic criteria for MDD were treated with an antidepressant (SSRI being the most common treatment). In addition, more than a quarter of patients with MDD in this study did not achieve remission after initial treatment underscoring the challenges in successful antidepressant treatment of MDD.FundingTakeda Pharmaceuticals U.S.A. Inc. and Lundbeck LLC
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Peterson, E. W., C. C. Cho, and M. L. Finlayson. "Fear of falling and associated activity curtailment among middle aged and older adults with multiple sclerosis." Multiple Sclerosis Journal 13, no. 9 (April 27, 2007): 1168–75. http://dx.doi.org/10.1177/1352458507079260.
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The purpose of this study was to identify factors associated with increased likelihood of reporting fear of falling (FoF) among people with multiple sclerosis (MS) and factors associated with activity curtailment among the subset of individuals reporting FoF. Cross-sectional data from telephone interviews with 1064 individuals with MS, aged 45—90 years living in the Midwestern United States were used. Logistic regression models examined factors associated with FoF and with activity curtailment among individuals reporting FoF. Of the participants, 63.5% reported FoF. Increased likelihood of reporting FoF was associated with being female, experiencing greater MS symptom interference during everyday activities, history of a fall in the past 6 months, and using a walking aid. Among participants reporting FoF, 82.6% reported curtailing activity. Increased likelihood of activity curtailment among people reporting FoF was associated with using a walking aid, needing moderate or maximum assistance with instrumental activities of daily living, and having less than excellent self-reported mental health. We concluded that FoF and associated activity curtailment are common among people aged 45—90 with MS. While FoF and associated activity curtailment may be appropriate responses to fall risk, the findings suggest that factors beyond realistic appraisal of fall risk may be operating. Multiple Sclerosis 2007; 13: 1168—1175. http://msj.sagepub.com
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Mahlanza, Tatenda Dawn, Maria Claudia Manieri, Eric C. Klawiter, Andrew J. Solomon, Ellen Lathi, Carolina Ionete, Idanis Berriosmorales, et al. "Prospective growth and developmental outcomes in infants born to mothers with multiple sclerosis." Multiple Sclerosis Journal 27, no. 1 (February 17, 2020): 79–89. http://dx.doi.org/10.1177/1352458520904545.
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Background: The importance of supporting pregnancy-related decisions in multiple sclerosis (MS) patients has increasingly been recognized and hence the need for prospective data on pregnancy and pediatric outcomes in this patient population. Objective: To assess prospective growth and developmental outcomes of infants born to mothers with multiple sclerosis (IMS). Methods: PREG-MS is a prospective multicenter cohort study in New England, United States. We followed 65 women with MS and their infants with up to 12 months consistent pediatric follow-up. Pediatric, neurologic, and demographic information was obtained via structured telephone interviews and validated with medical records. Results: No differences in infant weights and lengths with World Health Organization (WHO) 50th percentile standards were observed ( p > 0.05). However, larger head circumference (HC) measurements than WHO standards were reported in cohort infants ( p < 0.05). There was no association between HC and markers of maternal MS activity, demographic, or social factors. No irreversible pediatric developmental abnormalities were observed. Conclusion: This first prospective study on pediatric anthropometry in IMS suggests a possible increase in HC compared to WHO standards without an increase in irreversible developmental abnormalities. The observations are exploratory and require confirmation with larger prospective studies in diverse groups of MS patients.
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Amezcua, L., BT Lund, LP Weiner, and T. Islam. "Multiple sclerosis in Hispanics: a study of clinical disease expression." Multiple Sclerosis Journal 17, no. 8 (April 5, 2011): 1010–16. http://dx.doi.org/10.1177/1352458511403025.
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Background: Hispanics living with multiple sclerosis (MS) in the United States are not well defined. Objective: To describe the clinical characteristics of MS among Hispanic Whites (HW) in Southern California with those of non-Hispanic Whites (NHW). Methods: We performed a medical chart review to identify all cases of HW with MS ( n = 125) who were treated at our institution during a 1-year period. We also identified cases of NHW with MS (100 NHW) treated at those clinics. All HW patients were interviewed to ascertain ancestry including detailed migration history. Disease progression was assessed by ambulatory disability and defined as Expanded Disability Status Scale (EDSS) score ≥6. Results: Compared with NHW, HW were more likely to have a relapsing–remitting form of MS and a younger age of onset (28.4 ± 0.97 years) with presenting symptoms of optic neuritis and transverse myelitis. However, overall ambulatory disability did not differ between HW and NHW. Migration to the US at age >15 years was associated with increased risk of disability in HW. Conclusions: HW living in the USA may be at risk of developing MS at an earlier age compared with NHW. Migration history can play an important role in the management of HW with MS.
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Brownfield, Ryan, Barb Galantowicz, Claire Russell, Jennifer Chabot, and Scott Coven. "SWK-03. CAREGIVER EXPERIENCES FOR PEDIATRIC BRAIN TUMOR PATIENTS AND THEIR FAMILIES AT A DEDICATED MEDICAL SPECIALTY CAMP." Neuro-Oncology 22, Supplement_3 (December 1, 2020): iii465. http://dx.doi.org/10.1093/neuonc/noaa222.820.
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Abstract BACKGROUND Medical specialty camps have provided children with unique psychosocial experiences; however, dedicated pediatric brain tumor camps are rare in the United States, except in limited locations. This study aimed to glean caregiver perceptions from a dedicated family brain tumor camp, and to learn about the family experience with navigating a neuro-oncology diagnosis. DESIGN: Flying Horse Farms is a non-profit organization located in Mt. Gilead, Ohio and a member of the SeriousFun Children’s Network, a global community of camps and programs serving children with serious illnesses and their families, at no cost. The institutional review board at Ohio University approved this project at Flying Horse Farms in September 2017. Consent from caregivers was obtained prior to participation in the study, which provided the opportunity to complete three separate phases: a pre-camp survey, attend a semi-structured interview during the weekend, and complete a post-camp survey. RESULTS 11 families were present for the weekend, and 10 families consented to participate in all three phases. For 6 families, this was their first experience at Flying Horse Farms. For 9 of the 10 families, the camp met their expectations. Additionally, 9 out of 10 families reported they would be interested in attending a diagnosis specific camp again in the future. CONCLUSIONS This work demonstrates the feasibility of conducting research at a medical specialty camp without restricting the camp experience. Better understanding of the attendee’s attitudes toward camp may enhance the experience and the neuro-oncology journey in the future.
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Marek, Ashley P., Jean Dominique Morancy, Jeffrey G. Chipman, Rachel M. Nygaard, Robert M. Roach, and Michele M. Loor. "Long-Term Functional Outcomes after Traumatic Thoracic and Lumbar Spine Fractures." American Surgeon 84, no. 1 (January 2018): 20–25. http://dx.doi.org/10.1177/000313481808400112.
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The incidence of thoracolumbar spine fractures in blunt trauma is 4 to 5 per cent. These fractures may lead to neurologic injury, chronic back pain, and disability. Most studies from United States trauma centers focus on neurologic sequelae and/or compare treatment modalities. However, most patients with spine fractures do not have a neurologic deficit. Our primary objective was to determine the long-term outcome of traumatic thoracolumbar spine fractures, specifically addressing quality of life, chronic pain, and employment using a validated patient outcome survey. A chart review of 138 adult blunt trauma patients who sustained a thoracolumbar spine fracture and were admitted to our Level I trauma center from 2008 to 2013 was performed. A phone interview based on the Short-Form 12®, a general health survey, was then conducted. Of the 134 patients who met the inclusion criteria, 46 (34%) completed the survey. The average Short-Form 12® scores were 51.0 for the physical health component score and 52.9 for the mental health component score. These did not differ significantly from the national norm. Furthermore, 83 per cent (38) of the survey respondents returned to work full-time at the same level as before their injury. Majority of the patients (76%) said they did not have pain two to seven years after injury. Despite a commonly held belief that back injury leads to chronic pain and disability, after sustaining a thoracic or lumbar fracture, patients are generally able to return to work and have a comparable quality of life to the general population. This knowledge may be useful in counseling patients regarding expectations for recovery from trauma.
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Blier, Pierre. "Generic Substitution for Psychotropic Drugs." CNS Spectrums 14, no. 9 (September 2009): 1–7. http://dx.doi.org/10.1017/s1092852900024706.
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Most antidepressants and other psychotropics in clinical use are available as generic formulations (Table). The availability of lower-priced, generic drugs can benefit patients and third-party payers, but it should not be assumed that all generic drugs are equally beneficial. There are numerous reports in the literature of unexpected and untoward consequences that occur when a generic drug is substituted for the original brand-name drug. A previously stable clinical response may suddenly deteriorate, or the patient may experience new or more severe adverse events (AEs). The United States Food and Drug Administration requires that manufacturers of generic drugs demonstrate that their formulation has pharmacokinetic properties similar (or bioequivalent) to the brand-name drug. Bioequivalency studies are conducted in healthy volunteers, not in patients who would be treated with that drug. Moreover, bioequivalency studies are conducted on a current lot of the branded drug and do not account for variability between lots of the generic formulation. The manufacturer is only required to submit bioequivalency data that support the Abbreviated New Drug Application (ANDA); the FDA does not require disclosure of failed bioequivalence studies. Unlike brand-name drugs, lengthy and costly clinical studies are not required to show that the generic drug is effective and safe.Although the FDA has taken the position that bioequivalence and therapeutic equivalence are equal, many questions related to the use of generic drugs remain unanswered. The following question-and-answer session is an excerpt of an interview with Pierre Blier, MD, PhD, conducted by Diane Sloan, PharmD, which addresses the issue of generic substitution of psychotropic drugs.
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James, Anthony, Danelle Marable, Caroline Cubbison, Andrew Tarbox, Sarah Oo, Kenneth Freedberg, and Julie Levison. "1269. HIV Testing in a Large Community Health Center Serving a Multi-cultural Population: A Qualitative Study of Providers." Open Forum Infectious Diseases 5, suppl_1 (November 2018): S387. http://dx.doi.org/10.1093/ofid/ofy210.1102.
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Abstract Background In the United States, 15% of people with HIV (PWH) do not know their serostatus, leading to both individual morbidity and HIV transmission to others. While CDC guidelines recommend HIV screening for all individuals aged 13–64 years, racial and ethnic minorities in the United States continue to present to care with advanced HIV infection. Methods Our objective was to assess providers’ perspectives on barriers to and facilitators of HIV testing at an urban community health center serving a predominantly racial/ethnic minority population of low socio-economic status. Study staff conducted five focus groups from January 2017 to November 2017 with 74 health center staff: 20 adult medicine/primary care providers, 28 community health workers (CHWs), six urgent care physicians, six community health administrators, and 14 behavioral health providers. Each focus group ranged from six to 20 participants. In addition to exploring participants’ views on HIV testing in this setting, we also explored potential interventions to improve HIV testing. Interviews were digitally recorded. Data were analyzed using a grounded theory approach. We used open coding to develop themes and compared themes among provider groups. Results The main facilitators of routine HIV testing were clinical training in HIV/hepatitis care and CHWs engaging patients in topics that intersect with HIV risk factors. Providers’ perceptions of key barriers were patients’ cultural perceptions of HIV (e.g. HIV-related stigma), patients’ concerns about test confidentiality, competing medical and social issues, and provider lack of HIV knowledge. All groups agreed that HIV testing should occur through the primary care provider though acknowledged that patients may be seeking healthcare more frequently through mental health, urgent care, or social services than primary care. Primary care physicians wanted easier mechanisms to identify patients in need of HIV testing and assistance with offering the test to non-English language speaking patients. Conclusion Specific, focused efforts can lead to improved HIV testing in racial ethnic minorities in community health centers. Training to improve provider comfort, increasing CHW engagement, and a focus on patients’ cultural beliefs may all have an impact. Disclosures All authors: No reported disclosures.
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Silva, M. A., E. M. Brennan, E. Noyes, A. Royer, and R. Nakase-Richardson. "0729 Sleep Apnea Diagnosis And Severity And Their Impact On Cognition After TBI: A VA TBI Model Systems Study." Sleep 43, Supplement_1 (April 2020): A277—A278. http://dx.doi.org/10.1093/sleep/zsaa056.725.
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Abstract Introduction For persons with moderate-to-severe traumatic brain injury (TBI), chronic cognitive impairment contributes to long term disability. Health comorbidities may contribute to the neurologic burden in TBI. Indeed, obstructive sleep apnea (OSA) is associated with neuropathological and cognitive changes. The objective of this study was to examine the relationship between OSA and cognition after TBI. Methods Participants were prior inpatient rehabilitation patients drawn from the Tampa VA TBI Model Systems longitudinal study. Post-discharge interviews occurred 2 to 6 years post-TBI. Participants reported whether they were diagnosed with OSA and completed the Brief Test of Adult Cognition by Telephone (BTACT) which measures recall, working memory, processing speed, fluency, and reasoning. Participants with polysomnography (PSG) were separately analyzed to examine the impact of sleep apnea severity (i.e., Apnea-Hypopnea Index [AHI]) on cognition. Results Participants (N=104) were mostly male (95.2%), age M=37.7 (SD=12.5), Education M=13.6 years (SD=2.1), and 45.2% were diagnosed with OSA. Participants with and without OSA did not differ by age, education, gender, or time since injury at time of BTACT (ps > .05). ANCOVAs were conducted examining OSA diagnosis on BTACT subscale scores, covarying TBI severity level, but results did not reach statistical significance (ps > .05). A subset of participants with OSA had PSG (n=27), AHI score quartiles = 6.7/10.4/21.6. Higher AHI was associated with poorer reasoning (Spearman ρ = -0.45, p = .019). Nonsignificant results were found for word recall (Spearman ρ = -0.35, p = .074) and processing speed (Spearman ρ = -0.36, p = .069). Conclusion Severity of sleep apnea may influence aspects of cognition among persons with TBI, although these results are preliminary and need replication with a larger and more representative sample. Support This work was supported by the Veterans Health Administration Central Office VA TBI Model Systems Program of Research and subcontract from General Dynamics Information Technology [W91YTZ-13-C-0015, HT0014-19-C-0004] from the Defense and Veterans Brain Injury Center (DVBIC); and from the United States Department of Veterans Affairs [W81XWH-13-2-0095]; and from the United States Department of Defense Congressionally Directed Medical Research Programs; and from the Patient Centered Outcomes Research Institute (PCORI) [CER-1511-33005].
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Wyse, Jessica J., Linda Ganzini, Steven K. Dobscha, Erin E. Krebs, Janet Zamudio, and Benjamin J. Morasco. "Clinical Strategies for the Treatment and Management of Patients Prescribed Long-term Opioid Therapy." Pain Medicine 20, no. 9 (November 2, 2018): 1737–44. http://dx.doi.org/10.1093/pm/pny211.
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Abstract Objectives Across diverse health care systems, growing recognition of the harms associated with long-term opioid therapy (LTOT) for chronic pain has catalyzed substantial changes to policy and practice designed to promote safer prescribing and patient care. Although clear goals have been defined, how clinics and providers should most effectively implement these changes has been less well defined, and facilities and providers have had substantial flexibility to innovate. Methods Qualitative interviews were conducted with 24 Department of Veterans Affairs (VA) clinicians across the United States who prescribe LTOT for chronic pain. Interviews probed the practices and initiatives providers utilized to meet opioid safety requirements and address common challenges in caring for patients prescribed LTOT. Results Innovative strategies in the design and organization of clinical practice (urine drug testing, informed consent, limiting transfer requests, specialty patient panel) and resources utilized (engaged pharmacists, non-opioid pain treatments, intra-organizational collaborations) are described. Conclusions We conclude with recommendations designed to improve opioid prescribing practices, both within the VA and in other settings.
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Thatipelli, S., and A. A. Abbasi. "0846 Reports of Sleep Symptoms in Young Adults of College Age." Sleep 43, Supplement_1 (April 2020): A322. http://dx.doi.org/10.1093/sleep/zsaa056.842.
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Abstract Introduction Young adults of college age in the United States often report inadequate sleep. The objectives of this study were to identify a) how often young adults of college age report symptoms of insomnia, fatigue and mood disorder and b) identify differences in symptom reporting based on their sleep duration. Methods This is a cross-sectional study, using data from 2013 through 2018 of the National Health Interview Survey (NHIS). 11,028 subjects, ages 18-22 years, for whom information was available on duration of sleep were included. We analyzed reports of trouble falling sleep, trouble staying sleep, non-restorative sleep, fatigue and symptoms of mood disorder. Subjects were divided into 2 groups: ≤7 hours and > 7 hours of sleep. Data was analyzed using Complex Sample Analysis of IBM SPSS version 26. Results Out of the 11,028 subjects 50.7% were male and 49.3% were female. Mean sleep duration for all subjects was 7.44 ± 0.02 hours (mean± SE). 13.5% subjects reported trouble falling asleep while 10.6% reported trouble staying asleep for ≥4 nights per week. Non-restorative sleep and frequent fatigue were reported by 33.8% and 12.4% respectively. Daily/weekly symptoms of anxiety and depression were reported by 23.9% and 8.6% respectively. There were 48.4% subjects with ≤7 hours and 51.6 % with >7 hours of sleep. When compared to subjects with ≤7 hours to >7 hours of sleep, trouble falling asleep, trouble staying asleep and non-restorative sleep were reported by 19.9% vs. 7.5%, 14.8% vs. 6.6% and 45.9% vs. 22.4% respectively. Symptoms of fatigue, anxiety and depression reported by subjects with ≤7 hours vs. >7 hours of sleep were: 18.6% vs. 6.6%, 26.9% vs. 21% and 10.2% vs.7% respectively. Conclusion Young adults with ≤ 7 hours of sleep are more likely to report trouble falling sleep, trouble staying sleep, non-restorative sleep, fatigue and symptoms of mood disorder. Support None
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Smith, Theresa M., Monique R. Pappadis, Shilpa Krishnan, and Timothy A. Reistetter. "Stroke Survivor and Caregiver Perspectives on Post-Stroke Visual Concerns and Long-Term Consequences." Behavioural Neurology 2018 (October 4, 2018): 1–8. http://dx.doi.org/10.1155/2018/1463429.
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Approximately 800,000 people in the United States have a stroke annually. Up to two thirds of stroke survivors have some visual problems, which result in disability and can affect survivors’ overall rehabilitation outcomes. Although some post-stroke visual impairments can be corrected and respond well to intervention, ocular signs can be subtle and may not be recognized or reported by the stroke survivor but rather by a vigilant caregiver. The purpose of this study was to explore the post-stroke visual concerns and consequences expressed by stroke survivors and caregivers. This study employed a qualitative design using semistructured interviews conducted with a convenience sample of stroke survivors and caregivers recruited from either a community support group or skilled nursing and long-term care facilities. Interviews were recorded and transcribed verbatim. Comparative content analysis was used to identify vision-related themes by two independent coders. All research team members completed quality checking of coding. Twenty participants (11 stroke survivors and 9 caregivers) expressed visual concerns or consequences following stroke: (1) eye movement problems, (2) perceptual issues, and (3) consequences of vision problems or issues, which affected their daily life/quality of life. Stroke survivors and caregivers reported receiving vision care from (1) eye doctors, (2) occupational therapists, and (3) other healthcare professionals. All vision care providers need to be observant of potential post-stroke visual concerns. Stroke survivors should have a thorough vision evaluation to optimize their independence in everyday activities and quality of life.
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Jhaveri, Vimal V., Chrsitopher Sullivan, Ashley Ward, John Giurini, Adolf W. Karchmer, Isaac Stillman, Roger Davis, Jason Freed, Mary LaSalvia, and Wendy Stead. "326. More Specialties, Less Problems: Creating collaborative competency between Infectious Disease, Podiatry, and Pathology co-managing diabetic foot infections." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S235. http://dx.doi.org/10.1093/ofid/ofaa439.522.
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Abstract Background According to the 2016 and 2017 National Health Interview Survey, 9.7% of the US population is estimated to have diabetes mellitus (either type 1 or type 2). 1 Among patients with diabetes, there is a 15% lifetime risk of developing a foot ulcer, making it an extremely common medical problem seen in both outpatient and inpatient settings.2 In fact, Medicare spends $9–13 billion/year on diabetic foot osteomyelitis (DFO).3 Despite this high prevalence and cost, experts have not agreed on a set of diagnostic criteria for diagnosing DFO, 4 nor the optimal antibiotic management.5 For example, while traditionally diabetic foot osteomyelitis has been treated with 4–6 weeks of IV antibiotics in the United States, oral antibiotics have been shown to be effective with similar cure rates in multiple studies 6–8, non-inferior in a Cochrane review,5 and are recommended in the most recent (2012) Infectious Disease Society of America (IDSA) DFO clinical practice guidelines.9 Methods Representatives from ID, Podiatry, and Pathology collaborated to develop consensus on aspects of management of DFO. We created an educational session, inviting providers from all three departments to develop consensus on some of the controversial aspects of DFO. We assessed for knowledge gain by having these providers complete a pre-test survey as well as a post-test survey 2 weeks after the intervention. Results 27 providers completed both a pre and post-tests after attending the educational session. Significant improvements were observed in learners understanding of duration of antibiotic treatment and the role of oral antibiotics in certain cases of diabetic foot osteomyelitis to obviate the need for an unnecessary intravenous antibiotics and Peripherally Inserted Central Catheter (PICC) lines. Additionally, by working as an interdisciplinary group, many solvable misunderstandings were identified, and processes were adjusted to improve the quality and efficiency of care provided to these patients. Figure 1: Results of the Pre- and Post- Assessment Conclusion This multidisciplinary, educational session regarding management of DFO led to improved provider knowledge and collaborative competency between these three departments. Further study is being completed assessing patient outcomes before and after this intervention and will be available by IDWeek. Disclosures All Authors: No reported disclosures
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Fairley, Jessica K., Kaitlin R. Taibl, Taylor Landay, Amy C. Sherman, Henry M. Wu, and Matthew H. Collins. "442. Common symptoms of outpatient COVID-19 compared to non-COVID-19 Cases: A prospective epidemiologic study in a major US metropolitan area." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S288. http://dx.doi.org/10.1093/ofid/ofaa439.635.
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Abstract Background The majority of novel coronavirus 2019 (COVID-19) cases is comprised of non-critically ill adults. However, the medical epidemiology and clinical profile for mild COVID-19 is poorly described in the United States. Methods We prospectively recruited 151 mildly symptomatic adults from Emory Healthcare COVID-19 screening clinics in Atlanta, Georgia from March 18 to June 16, 2020. Interview-based questionnaires captured participants’ demographics, epidemiological history, and clinical features. Nasopharyngeal swabs were collected to test for SARS-CoV-2 by RT-PCR. Convalescent serum (13–74 days post symptom onset) from 19 participants was tested by an IgG ELISA. Descriptive and χ 2 analyses were performed to determine the characteristics of COVID-19 cases compared to patients who tested negative. Results A total of 151 patients were recruited. The majority were non-Hispanic white (51%), female (60%), middle-aged adults (46.3 y +/-15). Twenty-seven (17.9%) tested positive for SARS-CoV-2 and most frequently reported fever (63%), cough (67%), fatigue (56%), and myalgias (56%). See Table 1. Fever was statistically more common in positive cases vs negative (63% vs 34%, p = 0.005). Cases also experienced loss of taste (22%) and loss of smell (19%) more frequently than non-cases (p=0.01 and p=0.03). Diarrhea (22% vs 23%) and shortness of breath (33% vs 36%) did not differ significantly between groups. None of the 14 PCR-negative participants tested positive for SARS-CoV-2-specific IgG and 3 out of 5 COVID-19 cases tested positive for SARs-CoV-2-specific IgG. Conclusion Mild COVID-19 cases reported fever, loss of smell and loss of taste significantly more than non-COVID-19 cases. Strong correlations between anosmia and ageusia with COVID-19 have been reported elsewhere, however these symptoms were only present in 19–22% of cases at the time of testing, limiting their utility for clinical diagnosis. Also, none of the PCR-negative participants tested positive for convalescent serology, supporting good sensitivity and negative predictive value of the RT-PCR test used in our clinic. Symptoms alone cannot differentiate COVID-19 from other illnesses, highlighting the critical need for widely available and highly sensitive and specific diagnostic tests. Disclosures All Authors: No reported disclosures
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McGovern, Olivia L., Kelly Shaw, Christine Szablewski, Julie Gabel, Caroline Holsinger, Skyler Brennan, Bernard Wolff, et al. "2173. Detection of Chlamydia psittaci by rtPCR in Outbreak Specimens Tested at CDC—2018." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S737—S738. http://dx.doi.org/10.1093/ofid/ofz360.1853.
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Abstract Background Psittacosis is a respiratory illness caused by Chlamydia psittaci. The most commonly available diagnostic tests are serologic tests, which have low sensitivity and can cross-react with other chlamydial species. Serologic tests also require paired sera collected weeks apart, which is impractical for patient management. Real-time polymerase chain reaction (rtPCR) testing for C. psittaci is rapid, sensitive, and specific. However, rtRCR testing is only available at the CDC Respiratory Diseases Branch laboratory, and appropriate clinical specimen types need to be validated since psittacosis case detection is infrequent. In 2018, the first large psittacosis outbreak in the United States in 30 years occurred, allowing assessment of rtPCR performance among multiple clinical specimen types. Methods rtPCR test positivity rate and turnaround time were determined among 89 specimens tested at CDC from 54 outbreak patients with suspected psittacosis. rtPCR testing was performed on nucleic acid extracted from clinical specimens using oligonucleotides targeting the C. psittaci locus tag CPSIT_RS01985. Clinical information was collected by patient interview and medical record review. Results Positivity rates among the most common specimen types were 4.4% (2/46) for nasopharyngeal (NP) swab, 36.4% (8/22) for sputum, and 80.0% (4/5) for stool. Of 21 (24%) specimens with available data, the average time from patient symptom onset to specimen collection was 6 days (range 1–11 days). C. psittaci was detected in specimens from 13 of 54 outbreak patients tested (Table 1); all 13 patients had radiographically-confirmed pneumonia, and 7 were rtPCR-positive from a lower respiratory specimen only. Paired sputum and NP swab specimens were tested for 6 patients; C. psittaci was detected in all sputum but only 1 NP swab. The positive NP swab was from a patient requiring intensive care unit admission and intubation. All results were reported within 1 business day of specimen receipt in the lab. Conclusion These data suggest that lower respiratory specimens are more sensitive than NP swabs for rtPCR detection of C. psittaci; stool might be a suitable alternative. Widespread implementation of rtPCR testing using appropriate specimen types could improve psittacosis detection and inform timely public health interventions. Disclosures All authors: No reported disclosures.
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Smith, Richard A., James E. Berg, Laura E. Pope, Janice D. Callahan, Daniel Wynn, and Ronald A. Thisted. "Validation of the CNS emotional lability scale for pseudobulbar affect (pathological laughing and crying) in multiple sclerosis patients." Multiple Sclerosis Journal 10, no. 6 (December 2004): 679–85. http://dx.doi.org/10.1191/1352458504ms1106oa.
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Pseudobulbar affect (PBA) or pathological laughing and crying (PLC) is a disorder of affect that occurs in about 10% of multiple sclerosis (MS) patients. The objective of this study was to validate the CNS Emotional Lability Scale (CNS-LS) in MS patients and to correlate the results with the frequency and intensity of episodes of PLC. Physicians at seven private practice referral centers in the United States made a diagnosis concerning PLC based on patient interviews. Clinical coordinators separately administered the CNS-LS, a self-report measure of PLC with seven questions, to MS patients, including patients known to exhibit PLC, patients thought to be free of PLC, and newly diagnosed patients where PLC status was unknown, and the physician was blinded as to the results. A receiver operating characteristic (ROC) curve analysis was performed to define a cut-off best correlating with the physician’s diagnosis. Of 90 MS patients selected to complete the survey, 50 were physician diagnosed with PLC; 40 were without PLC, and 15 of these 90 patients were newly diagnosed with MS (B-6 months). Scores of 17 or higher corresponded to a sensitivity of 0.94 and a specificity of 0.83 (LR -/5.5, LR -/0.07); 89% of patients were correctly diagnosed. The area under the ROC curve was 0.95. Symptoms were greater in patients diagnosed as PLC than in non-PLC patients as evidenced by mean number of episodes/week, number of days/week with episodes, duration of an episode and total time in an episode. Similar results were observed if patients were classified as PLC or non-PLC according to CNS-LS score]-17, suggesting that the CNS-LS is a valid measure for the assessment of PLC in MS patients and could be a useful instrument for clinical and research purposes.
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Norton, Brianna L., Brianna L. Norton, Nataly Rios Gutierrez, Chinazo O. Cunningham, and Alain H. Litwin. "1062. HCV GET-UP: A Group Evaluation and Treatment Uptake Intervention Improves HCV Linkage to Care for PWID." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S559—S560. http://dx.doi.org/10.1093/ofid/ofaa439.1248.
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Abstract Background Though PWID represent the overwhelming majority of those living with HCV in the United States, most have not been treated. PWID often have reduced access to specialty care, as well as limited HCV knowledge, low perceived vulnerability to poor HCV-related health outcomes, poor self-efficacy, high levels of perceived stigma, and mistrust of healthcare providers. We therefore evaluated an primary care based HCV Group Evaluation and Treatment UPtake (HCV GET-UP) intervention to improve HCV medical evaluation and treatment uptake for HCV+ PWIDs. Figure 1 Methods We enrolled 84 HCV+ PWID and randomize them 1:1 to a 4-week group evaluation intervention followed by individual treatment (intervention) versus onsite treatment alone (control). The group consisted of 4 weekly 1-hour sessions focused on HCV education, peer motivation, and health behavior change skills, along with an HCV medical evaluation. Both arms received HCV treatment according to national guidelines. Baseline questionnaires were performed via Audio Computer-Assisted Self-Interview (ACASI) technology. Clinical Data was extracted from the medical chart. Our primary outcomes were HCV linkage to care (HCV evaluation) and treatment uptake. Bivariate analyses were performed to evaluate HCV treatment outcomes between arms using chi square tests. Results Of the 76 participants that have currently completed the study (84 enrolled) 35% identified their race as black, 61% identified their ethnicity as Hispanic, 79% were male, and 25% of the participants were homeless. 87% had genotype 1, 28% were HIV+, and 20% had cirrhosis. Baseline urine tocixicologies were positive for cocaine in 38% of participants and 40% for heroin. Of those randomized to the group treatment arm vs individual arm 87% vs 62% were linked to care (p=0.012), 51% vs. 41% initiated treatment (p=.35), 41% vs. 35% completed treatment (p=0.6), and 33% vs. 27% (p=0.6) Conclusion HCV GET-UP, a primary-care based group evaluation and treatment uptake intervention significantly improved linkage to care for HCV+ PWID. Though this is encouraging, we must integrate other interventions to aid PWID as they move through the more proximal steps of the HCV cascade, for HCV cure still remains elusive for the majority of PWID enrolled. Disclosures Chinazo O. Cunningham, MD, MPH, General Electric Health (Other Financial or Material Support, My husband is currently employed by General Electric Health and receives stock and stock options.)Quest Diagnostics (Other Financial or Material Support, My husband was previously employed by Quest Diagnostics and received stocks and stock options.) Alain H. Litwin, MD, MPH, MS, Gilead (Advisor or Review Panel member)Merck (Advisor or Review Panel member)
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Pogorzelska-Maziarz, Monika, Jingjing Shang, Ashley Chastain, and Patricia Stone. "2444. Infection Prevention in Home Healthcare: Results from a National Study of Home Health Agencies." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S845. http://dx.doi.org/10.1093/ofid/ofz360.2122.
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Abstract Background As the population of older Americans with chronic conditions continues to grow, the role of home healthcare (HHC) services in improving care transitions between acute care and independent living has become a national priority. This has led to the development of value-based purchasing (VBP) initiatives, changes in the Centers for Medicare and Medicaid Services’ Home Health Conditions of Participation, and the Joint Commission’s national patient safety goals for HHC. We aimed to describe the infection prevention and control (IPC) infrastructure in US home health agencies (HHA). Methods From March to November 2018, we conducted in-depth, phone interviews with 41 staff from 13 HHAs across the United States, including administrators, IPC and quality improvement (QI) personnel, registered nurses and home health aides. In October 2018, we launched a nationwide survey to a random sample of 1,500 HHAs stratified by census region, ownership status and urban/rural location, and achieved a 40% response rate. Transcripts of the qualitative interviews were coded and themes were identified using content analysis. Survey data were analyzed using descriptive statistics. Results Themes from the interviews included: 1) Uniqueness of HHC setting, 2) Importance of staff and patient/caregiver education, (3) Care coordination challenges, and, (4) Keys to success and innovation. From the surveys, we found that, at the majority of HHAs, the staff member in charge of IPC had other responsibilities including QI (57%), clinical/administrative/managerial (49%), supervision of clinical services/patient coordination (48%), and education/training (45%). For those staff members in charge of IPC, over a third had received no specific IPC training, and only 5% were certified in IPC. For those staff who received training, the training was provided by external consultants (26%) or a professional society/health department (28%). Respondents cited the most challenging aspect of IPC as collecting/reporting infection data (24%), adherence to/monitoring bag technique (15%) and adequate staff coverage (13%). Conclusion This work represents a current snapshot of IPC infrastructure and challenges in US HHC agencies and identifies important barriers to IPC in these settings. Disclosures All authors: No reported disclosures.
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Cope, Jennifer R., Mia Mattioli, Vaidehi Shah, Rebecca Greeley, Michele Hlavsa, and Vincent Hill. "1626. A Primary Amebic Meningoencephalitis Case Associated with Surfing in an Inland Surf Park." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S593. http://dx.doi.org/10.1093/ofid/ofz360.1490.
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Abstract Background Naegleria fowleri is a thermophilic ameba that is found in freshwater and causes primary amebic meningoencephalitis (PAM; 0–8 infections per year in the United States) when it enters the nose and migrates to the brain. Patient exposure to water containing the ameba typically occurs in warm freshwater lakes and ponds during recreational water activities. In September 2018, a 29-year-old man died of PAM after visiting a Texas inland surf park. Methods To determine water exposures, we reviewed medical records and conducted interviews with family and individuals who had traveled with the patient. To further investigate the inland surf park as a possible exposure source, we visited the facility and collected water, biofilm, and sediment samples from the surf park and other venues (water slides, lazy river, and cable park) within the facility. We assessed water sources and treatment practices, performed water quality tests, and tested for the presence of N. fowleri by culture and real-time PCR. Results Interviews revealed that the case-patient’s most probable water exposure in the 10 days before becoming ill occurred while surfing in an inland freshwater surf park where he fell off the surfboard into the water multiple times. The on-site investigation of the facility revealed a practice of manual chlorine treatment with monitoring, but no water filtering or record keeping to document water quality. Surf park water temperature was warm (25°C) and chlorine residual was negligible. N. fowleri was detected in 1 water and 1 sediment sample collected at the cable park venue, and viable thermophilic amebae were detected in all samples collected from the surf park, water slide, and cable park venues, as well from the sediment in the open-air groundwater reservoir feeding the venues. Conclusion This investigation documents a novel exposure in an inland surf park as the likely exposure causing PAM. Conditions in the surf park were conducive to amebic growth. Novel types of recreational water venues that do not meet traditional definitions of swimming pools, such as this surf park, might not meet the water quality standards for pools or similar treated venues. Clinicians and public health officials should remain vigilant for nontraditional exposures to water. Disclosures All authors: No reported disclosures.
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Chomsky, Noam, and Gabriel Matthew Schivone. "United States of Insecurity: Interview with Noam Chomsky." Monthly Review 60, no. 1 (May 2, 2008): 16. http://dx.doi.org/10.14452/mr-060-01-2008-05_2.
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Carias, Cristina, Tianyan Hu, and Ya-Ting Chen. "1379. Caregiver Burden related to Rotavirus Gastroenteritis: a systematic literature review." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S699. http://dx.doi.org/10.1093/ofid/ofaa439.1561.
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Abstract Background The health and economic impact of rotavirus gastroenteritis (RGE) is well researched, but the burden of RGE on caregivers and remaining family spillover effects has only been recognized recently. Efforts to quantify caregiver burden allow for a more holistic understanding of RGE’s disease burden; such an understanding is relevant when evaluating interventions to diminish RGE. In this review, we identified the methods used to quantify caregiver burden of RGE and summarize the findings. Methods We performed a systematic literature review on caregiver and family burden of RGE using PubMed and Scopus, combining MESH and free-range terms. We selected studies that estimated or conveyed the impact of RGE on the family via interviews, and administration of surveys or instruments. We focused on the caregiver and family’s subjective experience and included studies that quantified caregiver associated disutility weights, reports, stress, or emotional outcomes. Results After compiling the results of our search, we selected 10 publications (Figure 1). Four studies used the EQ-5D and the VAS to measure caregiver burden (Table 1). Caregiver utility at time of illness varied between 0.61 (caregivers of hospitalized children, Thailand), and 0.88 (caregivers of children enrolled at outpatient clinics, Canada). Caregiver burden was also measured in Spain (2 studies), Italy (3 studies), Belgium, France, Germany, Latvia, Poland, United States, Sweden, Taiwan and Vietnam, via stress scales (2 studies), especially designed questionnaires (2 studies), and interviews (2 studies). Using a questionnaire, RGE was found to disrupt family activities, cause stress and worry on caregivers; a 10-point stress scale revealed high levels of stress among caregivers in other countries. Using different instruments, the impact of RGE was found to increase with the severity of RGE. Results of the systematic literature review on caregiver burden. Caregiver utility for caring for patients with Rotavirus Gastroenteritis (RGE) obtained using the EQ-5D and the Visual Analogue Scale (VAS). Conclusion RGE in infants was found to significantly disrupt the quality of life of caregivers, and to impact family activities and routine. Methods to quantify caregiver burden vary often without a validated disease-specific instrument which hinders comparison between different countries and incorporating the results in economic models. Disclosures Cristina Carias, PhD, Merck (Employee, Shareholder) Tianyan Hu, PhD, Merck (Employee, Shareholder) Ya-Ting Chen, PhD, Merck & Co., Inc. (Employee, Shareholder)
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Heaney, Alice, Jeanette Wilburn, Shannon Langmead, Jaishri Blakeley, Susan Huson, Carly Jim, and Stephen P. McKenna. "A qualitative study of the impact of plexiform neurofibromas on need fulfilment in adults with neurofibromatosis type 1." SAGE Open Medicine 7 (January 2019): 205031211982968. http://dx.doi.org/10.1177/2050312119829680.
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Objective: To explore the impact of plexiform neurofibromas on the lives of adults with neurofibromatosis type 1. Background: Neurofibromatosis type 1 is a complex neurogenetic syndrome that affects many aspects of health and functioning. A common manifestation of neurofibromatosis type 1 is plexiform neurofibromas, non-cancerous tumours that can cause disfigurement, pain and neurologic disability. Patient-reported outcome measures used in this condition have addressed symptoms and functional ability but not how the condition affects patients’ lives, particularly, their ability to meet their human needs. Methods: Unstructured qualitative interviews were conducted with adults with neurofibromatosis type 1–associated plexiform neurofibromas in the United Kingdom and United States. Interviewees were encouraged to describe how plexiform neurofibromas affected their ability to meet their needs. Interviews were audio-recorded and transcribed verbatim. The UK and US transcripts were combined and theoretical thematic analysis was conducted. Results: In all, 42 interviews (United Kingdom = 20, United States = 22) were conducted. Transcripts revealed 696 statements on the impact of plexiform neurofibromas on need fulfilment. Five major themes emerged: appearance, relationships, independence, role fulfilment and pleasure. Conclusion: Neurofibromatosis type 1–associated plexiform neurofibromas have a major effect on individuals’ ability to meet their needs. An understanding of need fulfilment will complement information generated from traditional patient-reported outcome measures, particularly in a multi-faceted syndrome such as neurofibromatosis type 1.