Pub Date : 2025-02-01Epub Date: 2024-10-08DOI: 10.1212/CPJ.0000000000200383
Barbara G Vickrey, Augustin C Rubio, Matthew J Stowe, Tasha Ostendorf, Clifton L Gooch
Service lines are increasingly common for organizing multidisciplinary patient care. Concerns regarding impacts of neuroscience service lines were voiced at several national neurology department chair summits, prompting the American Academy of Neurology to convene a Service Lines Workgroup. Neurology department leaders nationally at institutions that had created or considered a neuroscience service line were interviewed to elicit their experiences and lessons learned. Potential benefits identified stemmed from additional resources that the service line structure yielded (patient navigators, quality improvement staff, technicians) and strengthening of cross-department collaboration. Potential pitfalls included top-down institutional decision-making regarding service line creation, lack of explicit goals, late involvement of neurology, imbalances in neurology representation in leadership, unclear impacts on department finances, and lack of education and research mission integration into service lines. Establishing a satisfactory decision-making structure in a matrixed arrangement and ensuring that funds flow allocations acknowledged neurology's "upstream" contributions were also challenges.
{"title":"Service Lines, Neurology, and Academic Medicine: Departmental Perspectives, Implementation Strategies, and Keys to Success.","authors":"Barbara G Vickrey, Augustin C Rubio, Matthew J Stowe, Tasha Ostendorf, Clifton L Gooch","doi":"10.1212/CPJ.0000000000200383","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200383","url":null,"abstract":"<p><p>Service lines are increasingly common for organizing multidisciplinary patient care. Concerns regarding impacts of neuroscience service lines were voiced at several national neurology department chair summits, prompting the American Academy of Neurology to convene a Service Lines Workgroup. Neurology department leaders nationally at institutions that had created or considered a neuroscience service line were interviewed to elicit their experiences and lessons learned. Potential benefits identified stemmed from additional resources that the service line structure yielded (patient navigators, quality improvement staff, technicians) and strengthening of cross-department collaboration. Potential pitfalls included top-down institutional decision-making regarding service line creation, lack of explicit goals, late involvement of neurology, imbalances in neurology representation in leadership, unclear impacts on department finances, and lack of education and research mission integration into service lines. Establishing a satisfactory decision-making structure in a matrixed arrangement and ensuring that funds flow allocations acknowledged neurology's \"upstream\" contributions were also challenges.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200383"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11464215/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142470881","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 : 2025-02-01Epub Date: 2024-11-21DOI: 10.1212/CPJ.0000000000200402
Hamada H Altalib
{"title":"Reflections in Studying Impact of Functional Seizure Services on Health Care Utilization Outcomes.","authors":"Hamada H Altalib","doi":"10.1212/CPJ.0000000000200402","DOIUrl":"10.1212/CPJ.0000000000200402","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200402"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11588420/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142731161","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: Stroke in young adults has a lifelong impact on activities of daily life, including driving, leisure, and community-based activities; social participation; and reduced productivity. The needs of young people with stroke (YPwS) are likely to vary across different countries, and the development of age-adapted information and interventions is therefore critical in addressing those needs. This study aims to (1) identify the unmet needs of people with stroke aged 18 to 55 years across countries with varied income levels and cultural backgrounds and (2) determine their preferred means to access knowledge and information about stroke in the young.
Methods: This international needs analysis used a phenomenologic qualitative design to gain in-depth perspectives about the experiences of YPwS. Participants were recruited from 9 countries of varied socioeconomic status. We interviewed 44 participants with stroke (men: 22; women: 21; transman: 1; mean age: 44.2 ± 8.5 years) living in the community (range of time since stroke: 0.5-10 years). The semistructured interview focused on lived stroke experience, unmet needs, helpful strategies to meet individual needs, hopes, and dreams. The interview was recorded, conducted in the participants' native language, and transcribed verbatim. Data were analyzed using inductive thematic analysis.
Results: Four main themes emerged from the interviews: (1) heterogeneity of unmet needs specific to YPwS, (2) invisible disability, (3) lack of age-specific stroke information, and (4) call for accessible information resources available in different formats. The results highlighted the need to provide long-term and contextually tailored support to YPwS, aligned with their recovery goals and age-specific needs. Initiatives such as peer-support groups, self-management or peer-mentoring programs, information resources in various formats, and participation in research projects could help address the unique needs of this population.
Discussion: Our results emphasize the importance of raising awareness of stroke in the young and the unique challenges of this population. Future research could focus on the development of stroke care pathways specific to YPwS.
{"title":"Unique Needs and Challenges Experienced by Young People With Stroke: An International Qualitative Analysis.","authors":"Marika Demers, Marina Charalambous, Li Khim Kwah, Shamala Thilarajah, Danira Bazadona, Sherita Chapman, Ahmed Nasreldein, Laetitia Yperzeele, Dinah Amoah, Carolee Winstein, Julie Bernhardt, Urvashy Gopaul","doi":"10.1212/CPJ.0000000000200406","DOIUrl":"10.1212/CPJ.0000000000200406","url":null,"abstract":"<p><strong>Background and objectives: </strong>Stroke in young adults has a lifelong impact on activities of daily life, including driving, leisure, and community-based activities; social participation; and reduced productivity. The needs of young people with stroke (YPwS) are likely to vary across different countries, and the development of age-adapted information and interventions is therefore critical in addressing those needs. This study aims to (1) identify the unmet needs of people with stroke aged 18 to 55 years across countries with varied income levels and cultural backgrounds and (2) determine their preferred means to access knowledge and information about stroke in the young.</p><p><strong>Methods: </strong>This international needs analysis used a phenomenologic qualitative design to gain in-depth perspectives about the experiences of YPwS. Participants were recruited from 9 countries of varied socioeconomic status. We interviewed 44 participants with stroke (men: 22; women: 21; transman: 1; mean age: 44.2 ± 8.5 years) living in the community (range of time since stroke: 0.5-10 years). The semistructured interview focused on lived stroke experience, unmet needs, helpful strategies to meet individual needs, hopes, and dreams. The interview was recorded, conducted in the participants' native language, and transcribed verbatim. Data were analyzed using inductive thematic analysis.</p><p><strong>Results: </strong>Four main themes emerged from the interviews: (1) heterogeneity of unmet needs specific to YPwS, (2) invisible disability, (3) lack of age-specific stroke information, and (4) call for accessible information resources available in different formats. The results highlighted the need to provide long-term and contextually tailored support to YPwS, aligned with their recovery goals and age-specific needs. Initiatives such as peer-support groups, self-management or peer-mentoring programs, information resources in various formats, and participation in research projects could help address the unique needs of this population.</p><p><strong>Discussion: </strong>Our results emphasize the importance of raising awareness of stroke in the young and the unique challenges of this population. Future research could focus on the development of stroke care pathways specific to YPwS.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200406"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11614391/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142780485","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 : 2025-02-01Epub Date: 2024-12-18DOI: 10.1212/CPJ.0000000000200420
Laura Kirkpatrick, Irena I Bellinski, Elizabeth E Gerard, Thomas McElrath, Alison M Pack, Kimford J Meador, Page B Pennell
Background and objectives: Cisgender women with epilepsy (WWE) have distinct reproductive health needs. It is unknown to what extent WWE and their health care providers (HCPs) are aware of recent research advances regarding the reproductive health of WWE. This study aimed to survey US health care providers and WWE about their knowledge, attitudes, and decision-making pertaining to reproductive health; their awareness of key findings from recent relevant research; and whether learning of these findings would change their decision-making.
Methods: A market research firm conducted an online survey of US health care providers and WWE using a proprietary nationally representative panel. Eligible HCPs included physicians and advance practice providers in neurology, obstetrics-gynecology, and primary care, who treat WWE. Eligible WWE were 18-45 years old and reported an epilepsy diagnosis and taking antiseizure medication. Data were analyzed through descriptive statistics and logistic regression.
Results: Four hundred one HCPs and 199 WWE completed the full survey. Among HCPs, 38% reported being very or extremely comfortable treating pregnant WWE. Seventy-nine percent of HCPs reported that recent relevant research findings were new to them, with 65% reporting that the findings seemed plausible and 49% reporting that the findings would probably or definitely change their management of pregnancy for WWE.Thirty percent of WWE reported that pregnancy is very or extremely safe for WWE, while 50% reported that it is somewhat safe, and 21% not at all or not very safe. Ninety-one percent of WWE reported that research findings were new to them, 37% reported that the findings seemed plausible, and 64% reported that the findings would probably or definitely influence their reproductive decision-making.
Discussion: Survey findings suggest suboptimal awareness of recent research advances pertaining to the reproductive health of WWE among WWE and their HCPs. Findings also suggest that dissemination and implementation of such findings may be impactful on the medical decision-making of both HCPs and WWE. Findings may guide future initiatives to ensure prompt dissemination and implementation of research advances in epilepsy and reproductive health.
{"title":"Knowledge, Attitudes, and Decision-Making About Reproductive Health and Epilepsy: A Survey of Health Care Providers and Women With Epilepsy.","authors":"Laura Kirkpatrick, Irena I Bellinski, Elizabeth E Gerard, Thomas McElrath, Alison M Pack, Kimford J Meador, Page B Pennell","doi":"10.1212/CPJ.0000000000200420","DOIUrl":"10.1212/CPJ.0000000000200420","url":null,"abstract":"<p><strong>Background and objectives: </strong>Cisgender women with epilepsy (WWE) have distinct reproductive health needs. It is unknown to what extent WWE and their health care providers (HCPs) are aware of recent research advances regarding the reproductive health of WWE. This study aimed to survey US health care providers and WWE about their knowledge, attitudes, and decision-making pertaining to reproductive health; their awareness of key findings from recent relevant research; and whether learning of these findings would change their decision-making.</p><p><strong>Methods: </strong>A market research firm conducted an online survey of US health care providers and WWE using a proprietary nationally representative panel. Eligible HCPs included physicians and advance practice providers in neurology, obstetrics-gynecology, and primary care, who treat WWE. Eligible WWE were 18-45 years old and reported an epilepsy diagnosis and taking antiseizure medication. Data were analyzed through descriptive statistics and logistic regression.</p><p><strong>Results: </strong>Four hundred one HCPs and 199 WWE completed the full survey. Among HCPs, 38% reported being very or extremely comfortable treating pregnant WWE. Seventy-nine percent of HCPs reported that recent relevant research findings were new to them, with 65% reporting that the findings seemed plausible and 49% reporting that the findings would probably or definitely change their management of pregnancy for WWE.Thirty percent of WWE reported that pregnancy is very or extremely safe for WWE, while 50% reported that it is somewhat safe, and 21% not at all or not very safe. Ninety-one percent of WWE reported that research findings were new to them, 37% reported that the findings seemed plausible, and 64% reported that the findings would probably or definitely influence their reproductive decision-making.</p><p><strong>Discussion: </strong>Survey findings suggest suboptimal awareness of recent research advances pertaining to the reproductive health of WWE among WWE and their HCPs. Findings also suggest that dissemination and implementation of such findings may be impactful on the medical decision-making of both HCPs and WWE. Findings may guide future initiatives to ensure prompt dissemination and implementation of research advances in epilepsy and reproductive health.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200420"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11668518/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142896305","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 : 2025-02-01Epub Date: 2025-01-04DOI: 10.1212/CPJ.0000000000200428
Jodie I Roberts, Alonso Gonzalo Zea Vera
{"title":"Practice Current-Surveys Navigating Equipoise in Clinical Neurology Worldwide: Stepping Outside of the Echo Chambers.","authors":"Jodie I Roberts, Alonso Gonzalo Zea Vera","doi":"10.1212/CPJ.0000000000200428","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200428","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200428"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11731370/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143008872","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 : 2025-02-01Epub Date: 2024-11-07DOI: 10.1212/CPJ.0000000000200410
Simon Hefner, Tiago Lerda Casaccia, Edda Hofstaetter, Ferdinand Otto, Kerstin Hellwig, Tobias Moser
Objectives: Anti-CD20 therapies are highly effective treatment options for patients with multiple sclerosis (MS), an inflammatory disorder of the CNS commonly affecting women of childbearing age. Anti-CD20 therapies are however unlicensed for use in pregnancy. Belonging to the IgG1 family, anti-CD20 monoclonal antibodies are likely to cross the placenta, especially after the 20th week of gestation. Our objective was to analyze the impact of ofatumumab (OFA), a subcutaneous anti-CD20 monoclonal antibody, during pregnancy.
Methods: We present the case of a woman with MS who accidentally administered OFA every 4 weeks until delivery. In addition to detailing the clinical and laboratory outcomes of both mother and child, we provide a summary of the available evidence regarding anti-CD20 treatment during pregnancy and breastfeeding.
Results: Our patient gave birth to a healthy girl between estimated gestational weeks 32-35. Notably, at 3 months postpartum and 4 months after the last OFA administration, the mother remained fully B-cell depleted while the B-cell counts of the child were within the normal range.
Discussion: Further data are necessary to confirm that OFA treatment during pregnancy does not affect neonatal B cells.
{"title":"Impact of Continuous Ofatumumab Exposure During Pregnancy in Multiple Sclerosis.","authors":"Simon Hefner, Tiago Lerda Casaccia, Edda Hofstaetter, Ferdinand Otto, Kerstin Hellwig, Tobias Moser","doi":"10.1212/CPJ.0000000000200410","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200410","url":null,"abstract":"<p><strong>Objectives: </strong>Anti-CD20 therapies are highly effective treatment options for patients with multiple sclerosis (MS), an inflammatory disorder of the CNS commonly affecting women of childbearing age. Anti-CD20 therapies are however unlicensed for use in pregnancy. Belonging to the IgG1 family, anti-CD20 monoclonal antibodies are likely to cross the placenta, especially after the 20th week of gestation. Our objective was to analyze the impact of ofatumumab (OFA), a subcutaneous anti-CD20 monoclonal antibody, during pregnancy.</p><p><strong>Methods: </strong>We present the case of a woman with MS who accidentally administered OFA every 4 weeks until delivery. In addition to detailing the clinical and laboratory outcomes of both mother and child, we provide a summary of the available evidence regarding anti-CD20 treatment during pregnancy and breastfeeding.</p><p><strong>Results: </strong>Our patient gave birth to a healthy girl between estimated gestational weeks 32-35. Notably, at 3 months postpartum and 4 months after the last OFA administration, the mother remained fully B-cell depleted while the B-cell counts of the child were within the normal range.</p><p><strong>Discussion: </strong>Further data are necessary to confirm that OFA treatment during pregnancy does not affect neonatal B cells.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200410"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11547831/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142624853","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 : 2025-02-01Epub Date: 2024-10-08DOI: 10.1212/CPJ.0000000000200360
Natasha Krishnadas, Marcia Chew, Antony Sutherland, Maja Christensen, Kirrily A Rogers, Christopher Kyndt, Fariha Islam, David G Darby, Amy Brodtmann
Background and objectives: Many neurodegenerative syndromes present with impairment of frontal networks, especially frontoinsular networks affecting social and emotional cognition. People presenting with frontal network impairments may be considered for a frontotemporal dementia (FTD) diagnosis. We sought to examine the diagnostic mix of patients referred with frontal network impairments to a single cognitive neurology service.
Methods: A retrospective review was conducted of all patients seen between January 2010 and December 2019 at the Eastern Cognitive Disorders Clinic, a quaternary cognitive neurology clinic in Melbourne, Australia. Patients were included if they met the following criteria: (1) were referred for suspected FTD or with a preexisting diagnosis of a FTD syndrome, (2) were referred for 'frontal behaviors' (i.e., disinhibition, disorganization, poor judgment, loss of empathy, apathy) and/or had an informant report of behavior change, and (3) had available referral documents and clinical consensus diagnosis. Referral diagnosis was compared against final diagnosis adjudicated by a consensus multidisciplinary team. Case details including age of symptom onset, Cambridge Behavioural Inventory-Revised scores, psychiatric history, and Charlson Comorbidity Index were compared against the final diagnosis.
Results: In total, 161 patients aged 42-82 years (mean = 64.5, SD = 9.0; 74.5% men) met inclusion criteria. The commonest final diagnosis was a FTD syndrome (44.6%: 26.7% behavioral variant FTD (bvFTD), 9.3% progressive supranuclear palsy, 6.2% semantic dementia, 1.2% corticobasal syndrome, and 1.2% FTD/motor neuron disease). A primary psychiatric disorder (PPD) was the next commonest diagnosis (15.5%), followed by vascular cognitive impairment (VCI, 10.6%), Alzheimer disease (AD, 9.9%), and other neurologic diagnoses (6.2%). A final diagnosis of bvFTD was associated with higher rates of medical comorbidities and more eating behavior abnormalities compared with a diagnosis of PPD. Screening cognitive tests and preexisting psychiatric history did not distinguish these 2 groups.
Discussion: A broad spectrum of neurologic and psychiatric disorders may present with impairments to frontal networks. Almost half of patients referred had a final FTD syndrome diagnosis, with bvFTD the commonest final diagnosis. People with PPD, VCI, and AD present with similar clinical profiles but are distinguishable using MRI and FDG-PET imaging. Medical and psychiatric comorbidities are common in people with bvFTD.
{"title":"Frontotemporal Dementia Differential Diagnosis in Clinical Practice: A Single-Center Retrospective Review of Frontal Behavioral Referrals.","authors":"Natasha Krishnadas, Marcia Chew, Antony Sutherland, Maja Christensen, Kirrily A Rogers, Christopher Kyndt, Fariha Islam, David G Darby, Amy Brodtmann","doi":"10.1212/CPJ.0000000000200360","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200360","url":null,"abstract":"<p><strong>Background and objectives: </strong>Many neurodegenerative syndromes present with impairment of frontal networks, especially frontoinsular networks affecting social and emotional cognition. People presenting with frontal network impairments may be considered for a frontotemporal dementia (FTD) diagnosis. We sought to examine the diagnostic mix of patients referred with frontal network impairments to a single cognitive neurology service.</p><p><strong>Methods: </strong>A retrospective review was conducted of all patients seen between January 2010 and December 2019 at the Eastern Cognitive Disorders Clinic, a quaternary cognitive neurology clinic in Melbourne, Australia. Patients were included if they met the following criteria: (1) were referred for suspected FTD or with a preexisting diagnosis of a FTD syndrome, (2) were referred for 'frontal behaviors' (i.e., disinhibition, disorganization, poor judgment, loss of empathy, apathy) and/or had an informant report of behavior change, and (3) had available referral documents and clinical consensus diagnosis. Referral diagnosis was compared against final diagnosis adjudicated by a consensus multidisciplinary team. Case details including age of symptom onset, Cambridge Behavioural Inventory-Revised scores, psychiatric history, and Charlson Comorbidity Index were compared against the final diagnosis.</p><p><strong>Results: </strong>In total, 161 patients aged 42-82 years (mean = 64.5, SD = 9.0; 74.5% men) met inclusion criteria. The commonest final diagnosis was a FTD syndrome (44.6%: 26.7% behavioral variant FTD (bvFTD), 9.3% progressive supranuclear palsy, 6.2% semantic dementia, 1.2% corticobasal syndrome, and 1.2% FTD/motor neuron disease). A primary psychiatric disorder (PPD) was the next commonest diagnosis (15.5%), followed by vascular cognitive impairment (VCI, 10.6%), Alzheimer disease (AD, 9.9%), and other neurologic diagnoses (6.2%). A final diagnosis of bvFTD was associated with higher rates of medical comorbidities and more eating behavior abnormalities compared with a diagnosis of PPD. Screening cognitive tests and preexisting psychiatric history did not distinguish these 2 groups.</p><p><strong>Discussion: </strong>A broad spectrum of neurologic and psychiatric disorders may present with impairments to frontal networks. Almost half of patients referred had a final FTD syndrome diagnosis, with bvFTD the commonest final diagnosis. People with PPD, VCI, and AD present with similar clinical profiles but are distinguishable using MRI and FDG-PET imaging. Medical and psychiatric comorbidities are common in people with bvFTD.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200360"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11464228/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142470872","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 : 2025-02-01Epub Date: 2024-10-08DOI: 10.1212/CPJ.0000000000200379
Levi C M Barros, Caroline Banfi, Julianne D Brooks, Maria A Donahue, Aya ElHassan, Chelsea N Wong, Z Paige L'Erario, Brandy E Fureman, Jeffrey Buchhalter, Sahar Zafar, Alison Kukla, Lidia M V R Moura
Background and objectives: Visibility of sexual and gender minority (SGM) people has been steadily increasing over the recent years; however, little is known about the distinct seizure and mental health characteristics among SGM people with epilepsy. In this study, we describe these characteristics among SGM subgroups.
Methods: Data on demographics, seizure metrics, mental health, and quality of life were collected using patient-reported questionnaires gathered at first epilepsy clinic visits as part of routine clinical care from January 2019 to September 2023 at Massachusetts General Hospital. SGM people were defined as people who completed both sexual orientation and gender identity questionnaires and reported a sexual orientation other than heterosexual and/or a gender identity other than cisgender. Seizure control was defined as 1 year or more without experiencing seizures. Anxiety, depression, and quality-of-life data were collected through ordinal scales (GAD-7, PHQ-9, and PROMIS 10, respectively). Descriptive statistics were used to compare data between groups. No association test was performed because of the descriptive nature of this study.
Results: From 4,046 first-visit questionnaires, 2,166 (53.53%) had sexual orientation and gender identity information, with 143 (6.6%) of these respondents identified as SGM. Seizure control was present in 27 (65.85%) and 401 (62.95%) heterosexual cisgender respondents. Median values of SGM and heterosexual cisgender respondents were 5 (interquartile range [IQR] 8) and 3 (IQR 6) for PHQ-9 (depression), 4 (IQR 7) and 3 (IQR 10) for GAD-7 (anxiety), 41.1 (IQR 14.5) and 45.8 (IQR 14.5) for PROMIS-10-Mental, and 47.7 (IQR 11.8) and 50.8 (IQR 15.4) for PROMIS-10-Physical, respectively.
Discussion: This study provides one of the first overviews of distinct epilepsy, mental health, and quality-of-life metrics among SGM people. The low proportion of survey responses regarding sexual orientation and gender identity fields indicate the need for improved data collection methods in epilepsy clinics.
{"title":"Health Disparities Among Sexual and Gender Minority People Living With Epilepsy: A Cross-Sectional Analysis.","authors":"Levi C M Barros, Caroline Banfi, Julianne D Brooks, Maria A Donahue, Aya ElHassan, Chelsea N Wong, Z Paige L'Erario, Brandy E Fureman, Jeffrey Buchhalter, Sahar Zafar, Alison Kukla, Lidia M V R Moura","doi":"10.1212/CPJ.0000000000200379","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200379","url":null,"abstract":"<p><strong>Background and objectives: </strong>Visibility of sexual and gender minority (SGM) people has been steadily increasing over the recent years; however, little is known about the distinct seizure and mental health characteristics among SGM people with epilepsy. In this study, we describe these characteristics among SGM subgroups.</p><p><strong>Methods: </strong>Data on demographics, seizure metrics, mental health, and quality of life were collected using patient-reported questionnaires gathered at first epilepsy clinic visits as part of routine clinical care from January 2019 to September 2023 at Massachusetts General Hospital. SGM people were defined as people who completed both sexual orientation and gender identity questionnaires and reported a sexual orientation other than heterosexual and/or a gender identity other than cisgender. Seizure control was defined as 1 year or more without experiencing seizures. Anxiety, depression, and quality-of-life data were collected through ordinal scales (GAD-7, PHQ-9, and PROMIS 10, respectively). Descriptive statistics were used to compare data between groups. No association test was performed because of the descriptive nature of this study.</p><p><strong>Results: </strong>From 4,046 first-visit questionnaires, 2,166 (53.53%) had sexual orientation and gender identity information, with 143 (6.6%) of these respondents identified as SGM. Seizure control was present in 27 (65.85%) and 401 (62.95%) heterosexual cisgender respondents. Median values of SGM and heterosexual cisgender respondents were 5 (interquartile range [IQR] 8) and 3 (IQR 6) for PHQ-9 (depression), 4 (IQR 7) and 3 (IQR 10) for GAD-7 (anxiety), 41.1 (IQR 14.5) and 45.8 (IQR 14.5) for PROMIS-10-Mental, and 47.7 (IQR 11.8) and 50.8 (IQR 15.4) for PROMIS-10-Physical, respectively.</p><p><strong>Discussion: </strong>This study provides one of the first overviews of distinct epilepsy, mental health, and quality-of-life metrics among SGM people. The low proportion of survey responses regarding sexual orientation and gender identity fields indicate the need for improved data collection methods in epilepsy clinics.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"15 1","pages":"e200379"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11464218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142470874","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 : 2025-02-01Epub Date: 2024-10-09DOI: 10.1212/CPJ.0000000000200355
[This corrects the article DOI: 10.1212/CPJ.0000000000200304.].
[这更正了文章DOI: 10.1212/CPJ.0000000000200304.]。
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