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The sudden unexpected death in epilepsy grief study

Buchhalter, Jeffrey; Andrews, Catherine; Donalty, Jeanne; Donner, Elizabeth; Friebert, Sarah; Friedman, Daniel; Patel, Avani; Lapham, Gardiner; Latzer, Itay Tokatly; Pearl, Phillip L; Ramachandrannair, Rajesh; Schaeffer, Sally; Stanton, Thomas
OBJECTIVES/OBJECTIVE:To explore the evolution of the grief experience following Sudden Unexpected Death in Epilepsy (SUDEP) and identify factors that assist the bereaved in coping with their loss. METHODS:A survey formulated by a multidisciplinary team gathered information gathered information on decedent and respondent demographics, epilepsy details, circumstances surrounding death, postmortem experiences, descriptions of grief overtime (from 3 months to > 10 years post death), insights into coping strategies and recommendations for assisting the bereaved. RESULTS:A total of 206 participants completed the survey (predominantly middle-aged white females who were parents of the deceased). Most respondents (69.2 %) were unaware of SUDEP prior to the death and strongly desired to have had prior information. Negative impacts on relationships and mental health were highest at three months post-loss but gradually improved over time; feelings of sadness persisted while anger and guilt decreased, and acceptance increased. Interactions with understanding peers, supportive family or friends, and professional counseling were identified as most helpful, alongside clear communication and support from medical professionals and advocacy groups. CONCLUSIONS:This study highlights the profound and evolving nature of grief following SUDEP, describes the importance of SUDEP disclosure as part of comprehensive epilepsy care, and illustrates the need for ongoing and dynamic support for the bereaved. Interpretation of the findings is limited as the respondents were predominantly middle-aged white females who were parents of the deceased.
PMID: 41702217
ISSN: 1525-5069
CID: 6004592

Navigating the patient journey in migraine prevention: An American Migraine Foundation position paper

Newman, Lawrence C; Lay, Christine; Lipton, Richard B; Ailani, Jessica; Digre, Kathleen B; Caplan, Arthur; Singh, Nim; Phillips, Heather; Koh, Rachel; Warrick, Royce; Dodick, David W
OBJECTIVE:This study aimed to understand the factors limiting access to medications for the preventive treatment of migraine and to improve access to evidence-based preventive care. BACKGROUND:For decades, the effective use of medication for the preventive treatment of migraine was limited by slow onset, slow and complex dose titration schedules, modest benefits, drug interactions, frequent side effects, and very low long-term adherence. The calcitonin gene-related peptide (CGRP) targeted preventive medications mitigate some of these limitations and demonstrated substantial therapeutic benefits in a significant proportion of adults with migraine. The American Headache Society considers these medications among the first-line options for migraine prevention, although access to them remains limited. The American Migraine Foundation hosted a single-day, multidisciplinary expert panel discussion to identify barriers to optimal preventive care and developed recommendations to address them. METHODS:Participants identified and prioritized barriers and used a modified nominal group technique to achieve consensus on them. A series of moderated discussions in plenary and breakout sessions was used to create possible solutions. Modified nominal group technique was also employed to achieve consensus on the priorities among these barriers and to achieve whole-group consensus on the recommendations. Ethical issues that inform access were discussed. RESULTS:Participants included eight neurologists and board-certified headache specialists, six representatives of reimbursement decision-makers, six employees of life sciences companies, four patient advocates with lived experience with migraine, and a medical ethicist. Among those who have consulted healthcare professionals and received a diagnosis of migraine, we identified four main barriers to accessing preventive treatment: restrictive prior authorization requirements, the perceived lack of real-world evidence and treatment guidelines, the need for clinician education, and the need for patient education. Consensus recommendations for eliminating barriers centered on using new evidence to evaluate policies that restrict the selection of first-line therapies, initiating/improving collaboration among stakeholders, sharing of data and best practices, and increased training. Participants agreed to explore novel definitions of the value of preventive treatment and to establish the Migraine Prevention Network to facilitate ongoing cooperation and collective action. However, due to financial limitations, staffing changes, and time constraints, post-meeting discussions led to a shift from establishing a broad Migraine Prevention Network to forming smaller task forces focused on the top-priority barriers (real-world evidence and The Patient Playbook) identified through collaborative voting among American Headache Society, American Migraine Foundation, and industry stakeholders. CONCLUSIONS:Adults with migraine face multiple barriers in accessing novel migraine-specific, CGRP-targeted preventive treatment. Stakeholders in the delivery of care, including clinicians, reimbursement decision-makers, life sciences companies, and patient and clinician advocates, may be able to overcome many of these barriers and improve access by working with and on behalf of patients.
PMID: 41044874
ISSN: 1526-4610
CID: 6004172

Defining the qualities of a surgical resident who "gets it": A qualitative analysis of faculty and resident perceptions

Sathe, Shaleen V; Agrawal, Ravi R; Yu, Jennifer; Wise, Paul E; Awad, Michael; Pei, Kevin Y
BACKGROUND:The phrase "getting it" is frequently used in surgical trainee assessment, yet its meaning remains undefined. This study explores how residents and faculty define the concept and whether perceptions align. METHODS:Semi-structured interviews were conducted with 11 residents and 13 faculty at a single institution and analyzed using reflexive thematic analysis. RESULTS:Residents described "getting it" as clinical competence, social awareness, feedback responsiveness, and team integration, while noting challenges with interpreting implicit expectations and the influence of faculty bias. Faculty described "getting it" as a gestalt recognition of initiative, insight, and sound clinical judgment. Both agreed that the concept is difficult to teach, vague, and susceptible to bias. CONCLUSIONS:Because residents and faculty interpret "getting it" differently, making the concept more explicit may enhance feedback quality, support trainee development, and reduce bias in assessment. Future work should focus on developing shared language frameworks around technical and non-technical competencies.
PMID: 41713184
ISSN: 1879-1883
CID: 6005062

Adverse Cardiovascular Events Among Younger and Older Patients Referred for Coronary CTA: The Mass General Brigham CCTA Registry

Huck, Daniel M; Berman, Adam N; Shiyovich, Arthur; Weber, Brittany N; Cardoso, Rhanderson; Blair, Camila V; Biery, David W; Besser, Stephanie A; Gupta, Sumit; Aghayev, Ayaz; Steigner, Michael; Miao, Joanne; Hainer, Jon; McCarthy, Cian; Hedgire, Sandeep; Nasir, Khurram; Shaw, Leslee J; Di Carli, Marcelo F; Ghoshhajra, Brian; Blankstein, Ron
BACKGROUND:Recent guidelines suggest that coronary computed tomography angiography (CTA) may be the preferred testing modality in patients <65 years of age who are suspected of having coronary artery disease (CAD). Because of a higher prevalence of CAD, the role of coronary CTA in older cohorts is less well established. OBJECTIVES/OBJECTIVE:The authors aimed to characterize the yield and prognostic utility of coronary CTA by age in a large registry with long-term follow-up. METHODS:Retrospective cohort of patients clinically referred to coronary CTA at 2 medical centers from 2006 to 2021, excluding patients with prior CAD, severe renal disease, and malignancy. Adjusted Cox regression was used to assess the association of CAD severity (absent, nonobstructive, obstructive) and extent (number of vessels with plaque) with adverse cardiovascular events (major adverse cardiovascular events [MACE]: cardiovascular death, nonfatal myocardial infarction, or ischemic stroke) across different age groups. RESULTS:Among 22,412 patients followed over a median of 6.2 years (Q1-Q3: 3.9-9.6 years), 16,726 were <65 years of age and 5,686 were ≥65 years of age. Older patients had a higher prevalence of obstructive CAD (38% vs 15%) and extensive plaque (52% vs 20% with 3- to 4-vessel involvement) compared with their younger counterparts. Nonobstructive plaque was common in both groups (<65 years of age: 37%; ≥65 years of age: 48%). Obstructive CAD was associated with MACE in both younger (HR: 2.45; P < 0.001) and older individuals (HR: 1.97; P < 0.001). Nonobstructive plaque was associated with MACE in younger individuals (HR: 1.39; P = 0.005), whereas only extensive nonobstructive CAD was associated with MACE in older individuals (HR: 1.56; P = 0.02). Among those with obstructive CAD on coronary CTA who underwent early invasive coronary angiography, revascularization was less common among older adults (48% vs 56%; P = 0.002). CONCLUSIONS:In a large coronary CTA registry, patients ≥65 years of age were more likely to have extensive plaque and stenosis. Although the prognostic value of coronary CTA may be lower among older adults with nonobstructive plaque (a group that has a similar event rate as those with no CAD), the presence of extensive nonobstructive plaque or obstructive stenosis was independently associated with a significantly higher rate of MACE. Newer techniques to better risk stratify patients with nonobstructive plaque may improve the value of coronary CTA, especially in older adults.
PMID: 41711627
ISSN: 1876-7591
CID: 6005002

Advancing Neurology in the Age of Artificial Intelligence

Grossman, Scott N; Kenney, Rachel C
PMID: 41698413
ISSN: 1098-9021
CID: 6004432

Novel Use of Nail Surgical Instruments for Grossing of Nail Pathology Specimens: Improving Specimen Quality and Safety for Laboratory Staff

Lee, Michael; Rubin, Adam I
PMID: 41705283
ISSN: 1600-0560
CID: 6004702

Evaluation of sex differences in survival among glioblastoma patients treated with immune checkpoint inhibitors

Nakhate, Vihang; Westergaard, Catharina; Lan, Zhou; Lasica, Aleksandra B; Muzikansky, Alona; Barlow, Brooke; Russ, Alyssa; Aker, Loai; Jiao, Albert; Pan, Ian; Nelson, Thomas A; Nwagwu, Chibueze D; Aquilanti, Elisa; Batchelor, Tracy T; Beroukhim, Rameen; Berger, Tamar R; Chukwueke, Ugonma; Castro, L Nicolas Gonzalez; Lee, Eudocia Quant; Mcfaline-Figueroa, J Ricardo; Nayak, Lakshmi; Rhee, John Y; Reardon, David A; Huang, Raymond Y; Wen, Patrick Y; Youssef, Gilbert
BACKGROUND/UNASSIGNED:Sex differences in glioblastoma (GBM) are recognized, but their treatment implications remain unclear. Recent preclinical studies have characterized mechanisms of sex-biased anti-tumor immunity in GBM, and have found in murine models that males derive greater survival benefit from immune checkpoint inhibitor (ICI). We evaluated sex differences associated with ICI in GBM patients. METHODS/UNASSIGNED:We retrospectively evaluated consecutive patients with newly diagnosed GBM (nGBM) or recurrent GBM (rGBM) treated with ICI on clinical trials at one institution from 2014 to 2022. Progression-free survival (PFS) and overall survival (OS) were evaluated by Kaplan-Meier analysis, univariate and multivariable regression models. Sex-by-treatment interactions were assessed relative to a concurrent reference group treated on non-ICI clinical trials. RESULTS/UNASSIGNED: = .361). No sex differences were observed when all immunotherapies were analyzed collectively. CONCLUSION/UNASSIGNED:In nGBM and rGBM, ICI therapy was not associated with sex difference in PFS or OS. Clinically meaningful sex-based outcome differences may be better understood by prospective evaluation in clinical trials.
PMCID:12901605
PMID: 41696493
ISSN: 2632-2498
CID: 6004352

AC Appropriateness Criteria® Female Infertility

,; VanBuren, Wendaline; Feldman, Myra K; Akin, Esma A; Dawkins, Adrian A; Po-Lan Jones, Lisa; Melamud, Kira; Patel-Lippmann, Krupa K; Plant, Gary M; Shampain, Kimberly L; Yauger, Belinda J; Wasnik, Ashish P
Infertility is defined as the inability to conceive spontaneously after 12 months of routinely unprotected intercourse in patients <35 years of age, and after 6 months in patients ≥35 years of age. Infertility also refers to the inability to achieve a successful pregnancy based on the medical, sexual, and reproductive history; age, physical findings; diagnostic testing; the need for medical intervention; or a combination of these variables for a patient. In the United States, 13% of women 15 to 49 years of age have accessed assisted fertility services and it has been suggested that the rate of infertility has been increasing, without geographic bias. Understanding the initial imaging evaluation is essential to this often complex and/or multifaceted clinical circumstance, which may involve the ovaries, uterus, and fallopian tubes. The American College of Radiology Appropriateness Criteria are evidence-based guidelines for specific clinical conditions that are reviewed annually by a multidisciplinary expert panel. The guideline development and revision process support the systematic analysis of the medical literature from peer reviewed journals. Established methodology principles such as Grading of Recommendations Assessment, Development, and Evaluation or GRADE are adapted to evaluate the evidence. The RAND/UCLA Appropriateness Method User Manual provides the methodology to determine the appropriateness of imaging and treatment procedures for specific clinical scenarios. In those instances where peer reviewed literature is lacking or equivocal, experts may be the primary evidentiary source available to formulate a recommendation.
PMID: 41706082
ISSN: 1558-349x
CID: 6004732

Defining the Role of Intravenous Iron in The Treatment of Patients with Heart Failure with Reduced Ejection Fraction and Iron Deficiency

Sephien, Andrew; Reljic, Tea; Sancassani, Rhea; Joly, Joanna M; Katz, Jason N; Kumar, Ambuj
Iron deficiency has been reported in up to 50% of patients with heart failure (HF), irrespective of the presence of anemia. Although no formally validated definition for iron deficiency in patients with HF exists, both the American and European Heart Failure Guidelines define iron deficiency as a serum ferritin of < 100 ng/ml, or a ferritin of 100-299 ng/ml, provided that the transferrin saturation (TSAT) is less than 20%. The presence of iron deficiency has been associated with poor patient-oriented outcomes, prompting the assessment of intravenous (IV) iron as a treatment for iron deficiency. This review summarizes the totality of the evidence on the diagnosis, evaluation and treatment of patients with iron deficiency. In addition, we highlight our approach to patients with HF with reduced ejection fraction and highlight areas for both clinical improvement and research.
PMID: 41697611
ISSN: 1179-187x
CID: 6004382

Temporal Changes in Access to Transplantation Among Pediatric Registrants

Donnelly, Conor; Kim, Jacqueline I; Motter, Jennifer D; Ishaque, Tanveen; Patel, Suhani S; Griesemer, Adam; Gentry, Sommer E; Segev, Dorry L; Massie, Allan B
BACKGROUND:Access to liver transplantation (LT) for pediatric registrants is complex and impacted by many factors. Assessing the state of pediatric LT requires understanding the balance between policy, the availability of livers, and the quantity of pediatric patients requiring LT. METHODS:Using Scientific Registry of Transplant Recipients data with Cox regression (to compare rates) and competing risk regression (to compare cumulative incidence), we evaluated pediatric patient characteristics, number of registrants transplanted, and waitlist mortality from (January 1, 2017-February 4, 2020) to (May 1, 2020-June 4, 2023) using the implementation of acuity circles to divide the eras. RESULTS:In 4314 pediatric LT registrants, transplantation rate increased in the post-policy era, compared with the pre-policy era (adjusted hazard ratio [HR], 1.05 1.12 1.20 ; P  < 0.001). When accounting for competing risks, the increase was attenuated and not statistically significant (adjusted subdistribution HR, 0.99 1.06 1.14 ; P  = 0.08); recipients were no more likely to die on the waitlist (adjusted subdistribution HR, 0.78 1.01 1.30 ; P  = 0.99). Importantly, the prevalent pediatric waitlist dropped from 396 (2017) to 225 (2023), the rate of deceased donor LT from pediatric donors increased (weighted HR, 1.20 1.31 1.42 ; P  < 0.001), and access to living donor LT increased, compared with the pre-policy era (weighted HR, 1.11 1.33 1.59 ; P  = 0.002). The transplant rate for pediatric patients did not decrease during the study period despite the introduction of acuity circles. During the study period, the prevalent waitlist shrank, access to LT from pediatric donors increased, and access to living donor LT increased. CONCLUSIONS:Comprehensive assessment following the policy change is necessary to ensure that pediatric candidates maintain priority. Changes in pediatric transplantation are modest and likely related to changes in the pool, rather than to the policy of acuity circles.
PMID: 41430543
ISSN: 1534-6080
CID: 6004182