Pub Date : 2025-08-01Epub Date: 2025-07-11DOI: 10.1212/CPJ.0000000000200486
Nathan Y Chu, Aila Jamali, Yazid N Al Hamarneh, Kaitlyn E Watson, Ross T Tsuyuki, Penelope S Smyth
Background and objectives: 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.
Methods: 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.
Results: 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.
Discussion: 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.
Trial registration information: This trial was registered on July 28, 2021, at the NIH United States National Library of Medicine, ClinicalTrials.gov. Clinical Trial ID: NCT04979546.
{"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}
Background and objectives: 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.
Methods: 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.
Results: 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 (p < 0.05). No adverse events were identified in relation to the BPA.
Discussion: 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.
{"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}
Pub Date : 2025-06-01Epub Date: 2025-03-27DOI: 10.1212/CPJ.0000000000200470
Lyell K Jones
{"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}
Pub Date : 2025-06-01Epub Date: 2025-03-27DOI: 10.1212/CPJ.0000000000200445
Mark J Rosenberg, Brian F Saway, William J Tarver, James H Pavela, Jacob Hall, Sami Al Kasab, Guilherme Porto, Donna R Roberts
Purpose of review: 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.
Recent findings: 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.
Summary: 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.
{"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}
Pub Date : 2025-06-01Epub Date: 2025-03-31DOI: 10.1212/CPJ.0000000000200464
Fazila Aseem, Emily Fink, Chuning Liu, John Whalen, Jessica Werdel, Parin Nanavati, Fei Zou, Angela Wabulya, Casey Olm-Shipman, Suzette Maria LaRoche, Clio Rubinos
Background and objectives: 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.
Methods: 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.
Results: 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; p < 0.0001, moderate 36.5 vs 29.3 hours; p = 0.01) and no significant change for the high-risk group (41.3 vs 40.4 hours; p = 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%).
Discussion: 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.
{"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}
Pub Date : 2025-06-01Epub Date: 2025-04-09DOI: 10.1212/CPJ.0000000000200471
Amy C Ogilvie, Ryan M Carnahan, Adys Mendizabal, Stephanie Gilbertson-White, Aaron T Seaman, Elizabeth A Chrischilles, Jordan L Schultz
Background and objectives: 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.
Methods: 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.
Results: 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.
Discussion: 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.
{"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}
Pub Date : 2025-06-01Epub Date: 2025-05-02DOI: 10.1212/CPJ.0000000000200482
Wesley T Kerr, Katherine N McFarlane
{"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}
Pub Date : 2025-06-01Epub Date: 2025-03-31DOI: 10.1212/CPJ.0000000000200461
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
Background and objectives: 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.
Methods: 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 χ2 tests.
Results: 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%; p < 0.05). Of 482 questionnaire respondents, 91% (n = 437) reported difficulty sleeping, which was more common with AS HD (p < 0.05; [p = 0.000]).
Discussion: The HDBOI study showed a substantial burden of suicidal ideation and sleep disturbances among PwHD, which tended to worsen with disease severity.
{"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}
Pub Date : 2025-06-01Epub Date: 2025-03-28DOI: 10.1212/CPJ.0000000000200458
Christina Murphy, Sara E Molisani, Amanda C Riisen, Carinna M Scotti-Degnan, Dina Karvounides, Stephanie Witzman, Michael C Kaufman, Alexander K Gonzalez, Mark Ramos, Christina L Szperka, Nicholas S Abend
Background and objectives: We conducted a quality improvement initiative to implement standardized screening for anxiety among adolescents with headache and/or epilepsy receiving outpatient neurology care at a quaternary health care system, consistent with recommendations from the American Academy of Neurology. Our SMART (Specific, Measurable, Achievable, Relevant, and Time-Based) aim was to screen ≥90% of established patients aged 12 years or older seen by a participating health care professional using a standardized anxiety screener by February 2024.
Methods: This initiative was conducted in patients seen for follow-up by 17 participating neurology health care professionals. Health care professional opinions were assessed before and after implementation of the Generalized Anxiety Disorder-7 (GAD-7), administered as a previsit questionnaire distributed using the electronic health record. The integrated workflow included a best practice advisory (BPA) alert that permitted easy access to interventions and automatic population of education materials into the after-visit summary. After 12 months of use (March 2023 to February 2024), we assessed demographic and diagnostic information, GAD-7 completion rates, anxiety symptom severity, BPA utilization, and health care professional acceptance of the intervention.
Results: The GAD-7 was completed for 64% of 3,671 encounters and by 71% of 2031 unique patients. The GAD-7 was more often completed for encounters if the patient was female, younger, or White or had a headache diagnosis. Among unique patients, anxiety symptoms were minimal in 50%, mild in 24%, moderate in 17%, and severe in 10%. Severe anxiety symptoms were more often present in female patients or those with a headache diagnosis. Among patients with severe anxiety symptoms, 66% had established behavioral health care plans and, for remaining patients, referrals were made to community behavioral health care professionals (11%), or pediatric psychologists (4%) or social workers (3%) within neurology. Clinicians indicated that the approach was easy to use and improved the quality of patient care.
Discussion: We implemented standardized EHR-based screening for anxiety symptoms for pediatric neurology patients, most of whom had headache or epilepsy. Screening was feasible, and approximately one-quarter of patients had moderate or severe anxiety symptoms. Future work will focus on improving completion rates of previsit questionnaires including the GAD-7 and optimizing clinician actions based on the screening data.
{"title":"Quality Improvement Initiative to Implement Anxiety Screening for Children and Teens With Headache and Epilepsy.","authors":"Christina Murphy, Sara E Molisani, Amanda C Riisen, Carinna M Scotti-Degnan, Dina Karvounides, Stephanie Witzman, Michael C Kaufman, Alexander K Gonzalez, Mark Ramos, Christina L Szperka, Nicholas S Abend","doi":"10.1212/CPJ.0000000000200458","DOIUrl":"10.1212/CPJ.0000000000200458","url":null,"abstract":"<p><strong>Background and objectives: </strong>We conducted a quality improvement initiative to implement standardized screening for anxiety among adolescents with headache and/or epilepsy receiving outpatient neurology care at a quaternary health care system, consistent with recommendations from the American Academy of Neurology. Our SMART (Specific, Measurable, Achievable, Relevant, and Time-Based) aim was to screen ≥90% of established patients aged 12 years or older seen by a participating health care professional using a standardized anxiety screener by February 2024.</p><p><strong>Methods: </strong>This initiative was conducted in patients seen for follow-up by 17 participating neurology health care professionals. Health care professional opinions were assessed before and after implementation of the Generalized Anxiety Disorder-7 (GAD-7), administered as a previsit questionnaire distributed using the electronic health record. The integrated workflow included a best practice advisory (BPA) alert that permitted easy access to interventions and automatic population of education materials into the after-visit summary. After 12 months of use (March 2023 to February 2024), we assessed demographic and diagnostic information, GAD-7 completion rates, anxiety symptom severity, BPA utilization, and health care professional acceptance of the intervention.</p><p><strong>Results: </strong>The GAD-7 was completed for 64% of 3,671 encounters and by 71% of 2031 unique patients. The GAD-7 was more often completed for encounters if the patient was female, younger, or White or had a headache diagnosis. Among unique patients, anxiety symptoms were minimal in 50%, mild in 24%, moderate in 17%, and severe in 10%. Severe anxiety symptoms were more often present in female patients or those with a headache diagnosis. Among patients with severe anxiety symptoms, 66% had established behavioral health care plans and, for remaining patients, referrals were made to community behavioral health care professionals (11%), or pediatric psychologists (4%) or social workers (3%) within neurology. Clinicians indicated that the approach was easy to use and improved the quality of patient care.</p><p><strong>Discussion: </strong>We implemented standardized EHR-based screening for anxiety symptoms for pediatric neurology patients, most of whom had headache or epilepsy. Screening was feasible, and approximately one-quarter of patients had moderate or severe anxiety symptoms. Future work will focus on improving completion rates of previsit questionnaires including the GAD-7 and optimizing clinician actions based on the screening data.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200458"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11962050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780716","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}
Pub Date : 2025-06-01Epub Date: 2025-04-29DOI: 10.1212/CPJ.0000000000200477
Laurence Poirier, Deborah M Siegal, Dominick Bossé, Jamie Brehaut, Brian Dewar, Ronda Lun, Michel Christopher Frank Shamy, Dar Dowlatshahi
Background and objectives: The diagnostic workup for patients with cryptogenic stroke includes investigating for occult cancer, which is known to increase the risk of stroke. Current guidelines do not provide specific recommendations regarding the optimal approach for occult cancer screening after cryptogenic stroke. We surveyed Canadian stroke and thrombosis physicians to determine current workup preferences for detecting occult cancer after cryptogenic stroke.
Methods: We designed and distributed an anonymous online survey targeting physicians who manage patients with cryptogenic stroke through professional memberships of the Canadian Stroke Consortium and Thrombosis Canada. Using 4 clinical scenarios representative of patients with cryptogenic stroke with different ages (younger or older than 50 years) and from both sexes, we asked respondents which tests they routinely recommend when investigating for occult cancer among a list of laboratory investigations, imaging, and procedures. Results were analyzed using descriptive statistics.
Results: We received 138 responses to 5 survey questions. The most commonly recommended investigations were complete blood count (79%), creatinine (63%), and coagulation tests (56%), and the most frequently recommended imaging test was CT of the abdomen and pelvis (39%). A minority of respondents indicated they would order guideline-directed age-appropriate cancer screening. Approximately half of surveyed specialists deferred the workup of cancer to a primary care physician, and 12% did not suggest any cancer workup at all.
Discussion: This survey of stroke and thrombosis experts found heterogeneity in testing for cancer screening in patients with cryptogenic stroke, with the majority either not screening at all or deferring tests to primary care providers. Our survey highlights the need for better evidence and evidence-based recommendations to guide the approach to cancer screening in this population.
{"title":"Malignancy Workup in Cryptogenic Stroke: A Survey of Canadian Stroke and Thrombosis Experts.","authors":"Laurence Poirier, Deborah M Siegal, Dominick Bossé, Jamie Brehaut, Brian Dewar, Ronda Lun, Michel Christopher Frank Shamy, Dar Dowlatshahi","doi":"10.1212/CPJ.0000000000200477","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200477","url":null,"abstract":"<p><strong>Background and objectives: </strong>The diagnostic workup for patients with cryptogenic stroke includes investigating for occult cancer, which is known to increase the risk of stroke. Current guidelines do not provide specific recommendations regarding the optimal approach for occult cancer screening after cryptogenic stroke. We surveyed Canadian stroke and thrombosis physicians to determine current workup preferences for detecting occult cancer after cryptogenic stroke.</p><p><strong>Methods: </strong>We designed and distributed an anonymous online survey targeting physicians who manage patients with cryptogenic stroke through professional memberships of the Canadian Stroke Consortium and Thrombosis Canada. Using 4 clinical scenarios representative of patients with cryptogenic stroke with different ages (younger or older than 50 years) and from both sexes, we asked respondents which tests they routinely recommend when investigating for occult cancer among a list of laboratory investigations, imaging, and procedures. Results were analyzed using descriptive statistics.</p><p><strong>Results: </strong>We received 138 responses to 5 survey questions. The most commonly recommended investigations were complete blood count (79%), creatinine (63%), and coagulation tests (56%), and the most frequently recommended imaging test was CT of the abdomen and pelvis (39%). A minority of respondents indicated they would order guideline-directed age-appropriate cancer screening. Approximately half of surveyed specialists deferred the workup of cancer to a primary care physician, and 12% did not suggest any cancer workup at all.</p><p><strong>Discussion: </strong>This survey of stroke and thrombosis experts found heterogeneity in testing for cancer screening in patients with cryptogenic stroke, with the majority either not screening at all or deferring tests to primary care providers. Our survey highlights the need for better evidence and evidence-based recommendations to guide the approach to cancer screening in this population.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 3","pages":"e200477"},"PeriodicalIF":2.3,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12051394/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144040581","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}