Nicholas U Schwartz, Connor D Dietz, Igor Prufer Araújo, Javier E Villanueva-Meyer, Winston Chiong, Courtney Lane-Donovan, Lawren Vandevrede, Peter A Ljubenkov, Yingbing Wang, David N Soleimani-Meigooni, Renaud La Joie, Julio C Rojas
{"title":"Changes of a Cerebral Cavernous Malformation Associated With Lecanemab Therapy in a Patient With Alzheimer Disease.","authors":"Nicholas U Schwartz, Connor D Dietz, Igor Prufer Araújo, Javier E Villanueva-Meyer, Winston Chiong, Courtney Lane-Donovan, Lawren Vandevrede, Peter A Ljubenkov, Yingbing Wang, David N Soleimani-Meigooni, Renaud La Joie, Julio C Rojas","doi":"10.1212/CPJ.0000000000200508","DOIUrl":"10.1212/CPJ.0000000000200508","url":null,"abstract":"<p><strong>Background and objectives: </strong>Antiamyloid immunotherapies are associated with increased risk of intracerebral hemorrhage, particularly in the setting of <i>APOE</i>-ε4 carriership, anticoagulation, thrombolytics, and other lesions at risk of hemorrhagic conversion. It is not known whether patients with cavernous malformations are at increased risk of complication because patients with these lesions were excluded from clinical trials.</p><p><strong>Methods: </strong>We describe a case of a patient with Alzheimer disease (AD) with an incidental cavernous malformation treated with lecanemab.</p><p><strong>Results: </strong>A 73-year-old <i>APOE</i> ε4 heterozygous woman with mild cognitive impairment and CSF biomarker evidence of AD underwent treatment with intravenous lecanemab. Baseline MRI revealed 3 lobar microhemorrhages and an asymptomatic left orbitofrontal cavernous malformation. This cavernous malformation exhibited gross radiologic stability at surveillance brain MRI before the 5th and 7th infusions, but on surveillance MRI after infusion 13 exhibited an asymptomatic increase in size with subacute blood products without additional new amyloid-related imaging abnormalities (ARIA), resulting in treatment discontinuation.</p><p><strong>Discussion: </strong>Lecanemab therapy was associated with asymptomatic expansion of an incidental cavernous malformation in a patient with AD and without evidence of ARIA.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 4","pages":"e200508"},"PeriodicalIF":3.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12204771/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144528930","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding Racial and Ethnic Disparities in Myasthenia Gravis Outcomes: EXPLORE-MG Registry Experience.","authors":"Nilay P McLaren, Bhaskar Roy, Richard J Nowak","doi":"10.1212/CPJ.0000000000200503","DOIUrl":"10.1212/CPJ.0000000000200503","url":null,"abstract":"<p><strong>Background and objectives: </strong>Past studies have reported racial and ethnic differences in patients with myasthenia gravis (MG) but either are over a decade old or only examine small samples. To better understand these differences, using the EXPLORE-MG registry, we conducted a retrospective cohort study of racial and ethnic differences in the characteristics and long-term outcomes of patients with MG.</p><p><strong>Methods: </strong>Patients with a diagnosis of MG confirmed by one or more of the assessments such as antibody seropositivity, positive single-fiber electromyography, or decremental repetitive nerve stimulation between January 2001 and October 2023 were included in the analysis. For logistic regression models, we performed a complete case analysis, therefore excluding patients with unknown age at onset or history of thymoma. Only patients with 2 years of follow-up data were included in the long-term outcome analysis.</p><p><strong>Results: </strong>Of 594 study participants, the clinical features of 473 White, 48 African American (AA), 42 Hispanic, and 523 non-Hispanic patients were compared. Hispanic patients (mean age 41.5 ± 20.3 years vs 58.9 ± 19.9 years; <i>p</i> < 0.001) were significantly younger at onset compared with non-Hispanic patients, and AA patients were significantly younger at onset compared with White patients (mean age 38.6 ± 17.1 years vs 60.7 ± 19.4 years; <i>p</i> < 0.001). AA patients underwent thymectomy more frequently (63.6% vs 29.5%; <i>p</i> < 0.001) compared with White patients. After adjusting for covariates, AA patients were approximately 3 times more likely to experience hospitalization for MG crisis or exacerbation compared with White patients (odds ratio 2.77; 95% CI 1.19-6.50; <i>p</i> = 0.018).</p><p><strong>Discussion: </strong>Despite variations in disease severity and clinical profiles, long-term outcomes of patients did not differ. Our findings identify the areas of MG care that vary across racial and ethnic groups, which should be further addressed by clinicians.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 4","pages":"e200503"},"PeriodicalIF":2.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12204767/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144529017","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nathan Y Chu, Aila Jamali, Yazid N Al Hamarneh, Kaitlyn E Watson, Ross T Tsuyuki, Penelope S Smyth
{"title":"Provider Experiences With Systematically Administered Patient-Reported Outcome Measures in Multiple Sclerosis: A Qualitative Sub-Study.","authors":"Nathan Y Chu, Aila Jamali, Yazid N Al Hamarneh, Kaitlyn E Watson, Ross T Tsuyuki, Penelope S Smyth","doi":"10.1212/CPJ.0000000000200486","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200486","url":null,"abstract":"<p><strong>Background and objectives: </strong>There has been interest in using patient-reported outcome measures (PROMs) to capture and systematically assess patients' perceptions of their multiple sclerosis (MS) experience and feed this information back to the clinician, but PROMs are not routinely used in MS outpatient clinics. We explored the perspectives of providers caring for persons with MS (PwMS) on the integration of PROMs into clinical practice.</p><p><strong>Methods: </strong>This was a qualitative substudy of a separate randomized controlled trial (ClinicalTrials.gov: NCT0497954) examining the effect of PROM use on depression and anxiety levels in PwMS. We conducted semistructured interviews with 10 providers caring for participants enrolled in the study and explored their experiences using PROMs with PwMS. Thematic analysis through a mixed inductive and deductive approach was performed using verbatim interview transcriptions.</p><p><strong>Results: </strong>Seven neurologists, 2 specialty MS nurse practitioners, and 1 MS registered nurse were interviewed. Providers expressed several facilitating factors with PROM usage, including engaging with patient-specific symptoms, initiating patient goal setting, and improving visit efficiency and patient satisfaction. However, providers also expressed barriers such as clinical workflow disruptions and technological barriers, skepticism toward the validity of results, and moral/ethical obligations to information gained from PROMs. Future opportunities elicited were the introduction of previsit PROMs and direct integration of PROMs into the electronic health record.</p><p><strong>Discussion: </strong>From an MS provider's perspective, PROMs offer useful information but barriers continue to exist. PROMs have promise as an adjunct tool in the care of PwMS to optimize their functioning and experiences as health care system users, and these results may inform future strategic implementation of routine PROMs in MS clinics.</p><p><strong>Trial registration information: </strong>This trial was registered on July 28, 2021, at the NIH United States National Library of Medicine, ClinicalTrials.gov. Clinical Trial ID: NCT04979546.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 4","pages":"e200486"},"PeriodicalIF":2.3,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12253963/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144626773","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Use of an Electronic Medical Record Alert to Prevent Iatrogenic Interventions in Patients With Psychogenic Nonepileptic Seizures.","authors":"Serena Yin, Lydia Wolkiewicz, Bichun Ouyang, Adriana Bermeo-Ovalle","doi":"10.1212/CPJ.0000000000200457","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200457","url":null,"abstract":"<p><strong>Background and objectives: </strong>Seizures are a common presentation to the emergency department and the hospital setting. Psychogenic or functional seizures are often misdiagnosed as epileptic seizures or status epilepticus, and patients are subject to aggressive interventions including sedation, intubations, and prolonged hospital admissions. An electronic medical record (EMR) best practice alert (BPA) was implemented in 2016 for all patients with a confirmed diagnosis of psychogenic nonepileptic seizures (PNES) at Rush University Medical Center. It informs health care providers of the diagnosis and provides education on interacting with the patient's chart. This study evaluates the effectiveness of an EMR BPA in preventing iatrogenic interventions for patients with a diagnosis of PNES.</p><p><strong>Methods: </strong>A retrospective chart review was performed on all patients who presented to Rush University Medical Center between January 2017 and December 2019 and had a PNES BPA triggered. Data on emergency department (ED) visits and inpatient admissions for these patients from the year before and the year after the first BPA trigger were compared. A Wilcoxon signed-rank test and McNemar test were used for analysis.</p><p><strong>Results: </strong>A PNES BPA was triggered in 178 patients. One hundred and forty-three (80%) were female. The mean age was 41 (18-81) years. There was a decrease in the number of ED visits; hospital admissions; intensive care unit (ICU) admissions; and interventions such as intubations and rescue benzodiazepine use in the year after the BPA was first triggered compared with the previous year (<i>p</i> < 0.05). No adverse events were identified in relation to the BPA.</p><p><strong>Discussion: </strong>This study demonstrates that the use of an EMR BPA can be safe and effective in preventing potential iatrogenic interventions and reducing acute health care utilization in patients with PNES. These BPAs can also be used as an educational tool to communicate the presentation, risks, and needs of these patients within the hospital setting.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200457"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11995282/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144021247","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Grounded in Evidence.","authors":"Lyell K Jones","doi":"10.1212/CPJ.0000000000200470","DOIUrl":"10.1212/CPJ.0000000000200470","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200470"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962046/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780654","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mark J Rosenberg, Brian F Saway, William J Tarver, James H Pavela, Jacob Hall, Sami Al Kasab, Guilherme Porto, Donna R Roberts
{"title":"Prevention of Cerebrovascular Emergencies in Spaceflight: A Review and a Proposal for Enhanced Medical Screening Guidelines.","authors":"Mark J Rosenberg, Brian F Saway, William J Tarver, James H Pavela, Jacob Hall, Sami Al Kasab, Guilherme Porto, Donna R Roberts","doi":"10.1212/CPJ.0000000000200445","DOIUrl":"10.1212/CPJ.0000000000200445","url":null,"abstract":"<p><strong>Purpose of review: </strong>A growing number of opportunities for paying customers to travel to space are becoming available. Preflight medical screening of these potential private astronauts will likely be performed by local physicians, with referral to specialists in aerospace medicine as required for more in-depth evaluation before flight qualification. Neurologic concerns contribute a portion of the potential medical risks for these private astronauts, especially with the participation of more diversified crews than traditional governmental astronauts. The objective of this article was to review the current knowledge base concerning cerebrovascular adaptation to spaceflight to inform risk factor assessment for flight-associated cerebrovascular emergencies by the neurologic community when performing initial medical screening of potential private astronauts.</p><p><strong>Recent findings: </strong>A review of published human spaceflight studies and medical guidelines regarding cerebrovascular risks for spaceflight was conducted. Most of the available literature describes cohorts of a small number of astronauts undergoing spaceflight missions of various flight profiles. While there are gaps in the literature, cerebrovascular adaptation to spaceflight occurs, which may alter the medical risk profile in susceptible individuals. The occurrence of an inflight cerebrovascular emergency could have devastating consequences; therefore, additional screening tests may be required, based on risk level and mission profile, in assessing the more diverse commercial spaceflight population expected over the next decade.</p><p><strong>Summary: </strong>With increasing interest in commercial space tourism among diverse participant populations, the stroke risk in microgravity/reduced gravity environments is unknown. Furthermore, stresses of rocket ascent/descent, abnormal fluid dynamics in microgravity, altered atmospheric conditions, and other unknown occupational hazards add additional complexity. Because inflight emergency management protocols have yet to be developed, the most effective tool to ensure spaceflight participant safety is comprehensive preflight preventative screenings. Determining neurologic risk factors is critical for developing evidence-based guidelines for preventative measures and treatment protocols in the future.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200445"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11966524/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780660","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Fazila Aseem, Emily Fink, Chuning Liu, John Whalen, Jessica Werdel, Parin Nanavati, Fei Zou, Angela Wabulya, Casey Olm-Shipman, Suzette Maria LaRoche, Clio Rubinos
{"title":"Implementation of 2HELPS2B Seizure Risk Score: A Cost-Effective Approach to Seizure Detection in the Intensive Care Units.","authors":"Fazila Aseem, Emily Fink, Chuning Liu, John Whalen, Jessica Werdel, Parin Nanavati, Fei Zou, Angela Wabulya, Casey Olm-Shipman, Suzette Maria LaRoche, Clio Rubinos","doi":"10.1212/CPJ.0000000000200464","DOIUrl":"10.1212/CPJ.0000000000200464","url":null,"abstract":"<p><strong>Background and objectives: </strong>Continuous EEG (cEEG) has become a standard for monitoring critically ill patients, but it is resource-intensive with limited availability. The 2HELP2B seizure risk score can help stratify seizure risk and aid in clinical decision making to optimize duration of monitoring. This study aimed to incorporate the 2HELPS2B score to inform cEEG duration and provide cost-effective care without compromising seizure detection.</p><p><strong>Methods: </strong>We conducted a quality improvement study that targeted clinical workflow and seizure risk stratification in the intensive care units of a tertiary academic hospital. The study included adult patients who underwent cEEG between June 2020 and December 2022 (n = 552), after excluding patients undergoing cEEG for management of status epilepticus, spell characterization, intracranial pressure monitoring, and post-cardiac arrest (n = 129). We performed a retrospective chart review to establish baseline cEEG volume, seizure incidence, and monitoring duration. We then introduced the 2HELPS2B risk score through multidisciplinary education and used published recommendations to suggest optimal cEEG duration. After the intervention, we analyzed the impact of integrating the 2HELPS2B score on cEEG duration and seizure detection rates.</p><p><strong>Results: </strong>Of 552 patients, most were low risk (n = 311, 56.3%), followed by moderate risk (n = 189, 34.2%) and high risk (n = 52, 9.4%). Before the intervention, cEEG duration was similar for all risk groups. After implementation of the 2HELPSB score, there was a significant reduction in cEEG duration for low-risk and moderate-risk patients (low 36.3 vs 23.8 hours; <i>p</i> < 0.0001, moderate 36.5 vs 29.3 hours; <i>p</i> = 0.01) and no significant change for the high-risk group (41.3 vs 40.4 hours; <i>p</i> = 0.92). Seizure detection was low except for the high-risk group (1.3% vs 7.9% vs 39.1%). Reduction in cEEG duration after implementation of the 2HELPS2B score did not lead to a significant change in seizure detection (0.6% vs 9% vs 37.9%).</p><p><strong>Discussion: </strong>Most critically ill patients had low or moderate seizure risk and, accordingly, a low incidence of seizures detected during cEEG. Implementing the 2HELPS2B seizure risk score allowed customization of cEEG duration for individual patients, applying the practice of precision medicine. This approach successfully improved cEEG utilization without compromising seizure detection. In conclusion, implementing seizure risk stratification can provide cost-effective monitoring and improve cEEG access.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200464"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962049/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron T Seaman, Elizabeth A Chrischilles, Jordan L Schultz
{"title":"Predictors of Health Care Utilization for Individuals With Manifest Huntington Disease.","authors":"Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron T Seaman, Elizabeth A Chrischilles, Jordan L Schultz","doi":"10.1212/CPJ.0000000000200471","DOIUrl":"10.1212/CPJ.0000000000200471","url":null,"abstract":"<p><strong>Background and objectives: </strong>There is a need to understand how different factors influence health care utilization for patients with Huntington disease (HD) to maximize benefits of primary and specialty care while minimizing need for costly emergency visits or hospitalizations. The primary objective of this study was to characterize how settings where patients with HD in Northern America receive care change throughout the disease course and determine whether the likelihood of different types of service utilization is influenced by clinical, sociodemographic, and caregiver characteristics.</p><p><strong>Methods: </strong>Data from the Enroll-HD study and joinpoint regression were used to assess trends in neurology visits, general practitioner visits, emergency department visits, and inpatient stays over the disease course and as a function of total functional capacity. Generalized estimating equation models were then used to identify factors associated with use of these different services in the 6 months before their study visit.</p><p><strong>Results: </strong>Visits from 1,631 participants in the Northern America region from the Enroll-HD study were included in this study. Trends in neurology, emergency, and inpatient visits remained constant over most of the disease duration. For the general practitioner visits, there was an increasing trend in use throughout the course of disease. Clinical factors, such as psychiatric symptoms, functional ability, and comorbidities, were associated with use of multiple types of health care services. Sociodemographic and caregiver factors, such as race or ethnicity, urban or rural residence, and caregiver employment status, were also associated with use of multiple health care services.</p><p><strong>Discussion: </strong>Clinical, sociodemographic, and caregiver-related factors were all associated with outpatient, emergent, and inpatient care. This work identifies multiple avenues for future research on how to improve access to and quality of care for patients with HD, specifically relating to reducing the need for emergency visits and inpatient stays and promoting collaboration among primary and specialty clinicians.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200471"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12021023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144025511","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"To Take or Not to Take Antiseizure Medications: Patient-Centered Decision-Making About Discontinuation After Seizure Freedom.","authors":"Wesley T Kerr, Katherine N McFarlane","doi":"10.1212/CPJ.0000000000200482","DOIUrl":"10.1212/CPJ.0000000000200482","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200482"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12054742/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144020356","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Idaira Rodríguez Santana, Samuel A Frank, Tiago A Mestre, Astri Arnesen, Jamie L Hamilton, Hayley Hubberstey, Michaela Winkelmann, Elena Hernandez-Jimenez, Jeff Frimpter, Ricardo Dolmetsch, Talaha M Ali
{"title":"Suicidal Ideation and Sleep Disturbances Among People With Huntington Disease: Evidence From the HDBOI Study.","authors":"Idaira Rodríguez Santana, Samuel A Frank, Tiago A Mestre, Astri Arnesen, Jamie L Hamilton, Hayley Hubberstey, Michaela Winkelmann, Elena Hernandez-Jimenez, Jeff Frimpter, Ricardo Dolmetsch, Talaha M Ali","doi":"10.1212/CPJ.0000000000200461","DOIUrl":"10.1212/CPJ.0000000000200461","url":null,"abstract":"<p><strong>Background and objectives: </strong>Suicidal ideation and sleep disturbances are more common among people with Huntington disease (PwHD) than otherwise healthy peers; however, the scope and magnitude of these challenges are not well understood. This study evaluated suicidal thoughts and sleep disturbances among PwHD in Europe and the United States using data from the Huntington's Disease Burden of Illness (HDBOI) study.</p><p><strong>Methods: </strong>The HDBOI study is a cross-sectional burden-of-illness study of PwHD in France, Germany, Italy, Spain, the United Kingdom, and the United States. Eligible participants were adults (18 years and older) with motor manifest Huntington disease (HD) ≥ 12 months before study recruitment. PwHD were categorized as having early-stage (ES), mid-stage (MS), or advanced-stage (AS) HD as reported by the treating physician. Data were collected by the physician, and a voluntary questionnaire was completed by the PwHD or a caregiver. All findings were analyzed descriptively. Differences were assessed using analysis of variance or χ<sup>2</sup> tests.</p><p><strong>Results: </strong>A total of 2,094 PwHD were included; 1,602 (77%) were from Europe and 492 (23%) were from the United States, with 846 (40%) with ES, 701 (33%) with MS, and 547 (26%) with AS HD. PwHD reported current (13%, n = 272) or previous (28%, n = 575) suicidal ideation, which was more common with advanced HD (ES, 11%; MS, 14%; AS, 15%; <i>p</i> < 0.05). Of 482 questionnaire respondents, 91% (n = 437) reported difficulty sleeping, which was more common with AS HD (<i>p</i> < 0.05; [<i>p</i> = 0.000]).</p><p><strong>Discussion: </strong>The HDBOI study showed a substantial burden of suicidal ideation and sleep disturbances among PwHD, which tended to worsen with disease severity.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200461"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962051/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143772928","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}