Neurology. Clinical practice最新文献

{"title":"Practical Review of Role and Usage of Corticosteroids in Modern Neuro-Oncology Care.","authors":"Christine Lu-Emerson, Chris Lee, Megan E H Still, Ashley P Ghiaseddin, Mina Lobbous, Surabhi Ranjan, Akanksha Sharma, Nestor Galvez-Jimenez, Rachel S F Moor, Sylvia C Kurz, Denise Leung, Megan Nicole Thomas, Matthew Smith-Cohn, Edina Komlodi-Pasztor, Elizabeth Coffee, David Schiff, Joshua Amit Budhu, Katherine B Peters","doi":"10.1212/CPJ.0000000000200679","DOIUrl":"10.1212/CPJ.0000000000200679","url":null,"abstract":"<p><strong>Purpose of review: </strong>Corticosteroids are commonly used in the treatment of neuro-oncology patients. Unfortunately, the benefits of steroids must be balanced against the potential development of complications. This review provides guidance for the usage of steroids in the management of neuro-oncology patients.</p><p><strong>Recent findings: </strong>Steroids should only be used as a temporizing measure in brain tumor patients to minimize symptoms secondary to mass effect from the tumor. For instance, because of the long half-life of corticosteroids, dosing should be limited to daily or twice per day, with the second dose given no later than early afternoon. Owing to its effects on multiple organ systems including endocrine, dermatologic, immunologic, gastrointestinal, orthopedic, and neuropsychiatric, prolonged steroid use can increase patient morbidity. They can also directly alter the potency of cancer-directed therapy including immunotherapy and chemoradiation. Steroid-sparing options, including bevacizumab, have emerged as means to minimize toxicity. Finally, the effects of steroid on tumor response has been formally integrated into imaging response assessment.</p><p><strong>Summary: </strong>Corticosteroids are an integral and useful treatment of neuro-oncology patients. We recommend using the lowest effective dose, with its frequency limited to 1 to 2 times per day and to taper them off as soon as possible to minimize toxicity and morbidity. The use of corticosteroids in clinical practice warrants specific consideration in the setting of immunotherapy and with assessments of imaging response.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 6","pages":"e200679"},"PeriodicalIF":3.7,"publicationDate":"2026-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13676283/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149207529","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":"Pediatric Spinal Cord Stroke: Clinical Presentation, MRI Features, and Suspected Mechanisms.","authors":"David O Acero-Garces, Eliza Gordon-Lipkin, Doris D M Lin, Lisa R Sun, Ryan J Felling, Philippe Gailloud, Matthew J Elrick, Carlos A Pardo, Haiwen Chen","doi":"10.1212/CPJ.0000000000200667","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200667","url":null,"abstract":"<p><strong>Background and objectives: </strong>Spinal cord stroke (SCS) is an underrecognized cause of severe acute myelopathy in children that can be misdiagnosed as an infectious or inflammatory process. Limited characterization of clinical and neuroimaging features of pediatric SCS impede timely and accurate diagnoses. Our objectives were to (1) identify clinical and radiologic features of SCS to prompt timely evaluation and accurate diagnosis and (2) gain insight into mechanisms of SCS.</p><p><strong>Methods: </strong>We conducted a retrospective case analysis of children (<18 years old) diagnosed with SCS at a specialized referral institution between 2010 and 2025. Clinical records, imaging, and laboratory data were reviewed to identify key features of pediatric SCS.</p><p><strong>Results: </strong>Among the 56 included patients, 28 were male (50%), and the age distribution was bimodal, with peaks at 1 and 14 years. Pediatric SCS presented with hyperacute onset of motor, sensory, bladder/bowel, and pain symptoms. The lesions were predominantly anterocentral, longitudinally extensive, with the cervical spinal cord being most often affected. Over time from the onset of symptoms, MRI diffusion restriction decreased, while gadolinium enhancement increased. CSF profile was noninflammatory in 95% of cases. Suspected mechanisms were identified in 63% of cases, with vascular compression being the most commonly identified mechanism in 17 participants (30%), while 38% were idiopathic. Chiari I malformations were identified as the main suspected cause of vascular compression, occurring in a subgroup of young patients with cervical SCS (n = 8, 14%). Serum studies identified hypercoagulability in 38% of the 40 participants evaluated.</p><p><strong>Discussion: </strong>Recognition of specific clinical and neuroimaging profiles in pediatric patients with SCS may facilitate earlier identification and intervention. We propose a systematic evaluation of clinical history, with particular attention to the temporal course from symptom onset to nadir, early acquisition of spine MRIs with diffusion-weighted imaging sequences, serologic evaluations for hypercoagulability, and CSF studies to exclude inflammatory etiologies. This approach will provide a framework for continued efforts to better understand the mechanisms underlying pediatric SCS and develop prevention and treatment strategies.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 6","pages":"e200667"},"PeriodicalIF":3.7,"publicationDate":"2026-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13629489/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149112506","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":"Digital Health Technologies for Risk Factor Management and Secondary Prevention After Stroke: A Systematic Review and Meta-Analysis.","authors":"Shervin Badihian, Margarita Fedorova, Bradley Ashley Ong, Nicolas R Thompson, Neil Nero, Ken Uchino, Shumei Man","doi":"10.1212/CPJ.0000000000200669","DOIUrl":"https://doi.org/10.1212/CPJ.0000000000200669","url":null,"abstract":"<p><strong>Purpose of review: </strong>Digital health interventions are increasingly used in medicine to manage chronic conditions. However, the effectiveness, feasibility, and consistency of these interventions in poststroke risk factor management and secondary prevention remain uncertain. We conducted a systematic review and meta-analysis to evaluate the effect of digital health-supported interventions on vascular risk factor control among stroke survivors. We systematically searched MEDLINE, Embase, and Cochrane CENTRAL from inception through September 2025 for randomized, single-arm, and observational studies evaluating digital health interventions, defined as mobile health applications, wearable devices, or combined platforms, among adults with ischemic stroke, hemorrhagic stroke, or transient ischemic attack. Outcomes of interest included systolic and diastolic blood pressure, lipid levels, weight, physical activity, medication adherence, quality of life, and clinical events. Random-effects meta-analyses were performed for outcomes reported by ≥ 3 studies. Feasibility outcomes, including recruitment, retention, adherence, and usability were synthesized qualitatively.</p><p><strong>Recent findings: </strong>Twenty-nine studies encompassing 8,389 participants were included. Digital health interventions were associated with modest reductions in systolic blood pressure compared with control conditions, including usual care and minimal-intervention comparators (pooled between-group mean difference, -5.8 mm Hg; 95% CI -9.9 to -1.6). However, prediction intervals crossed the null value, and between-study heterogeneity was substantial. No consistent effects were observed for diastolic blood pressure, lipid levels, or weight. Reporting of physical activity, medication adherence, and quality-of-life outcomes was heterogeneous, precluding quantitative pooling, although most studies reported favorable trends. Overall feasibility was high, with an aggregate dropout rate of 3.6% (95% CI 3.2%-4.0%) and high user acceptability across studies. Most trials enrolled participants with mild functional impairment and short follow-up durations (median ≈3 months). Few studies were powered to assess recurrent stroke or mortality.</p><p><strong>Summary: </strong>Digital health-supported interventions for secondary stroke prevention seem feasible and acceptable, with evidence of modest short-term improvements in blood pressure. However, clinical effectiveness across other vascular risk factors remains inconsistent. In addition, substantial heterogeneity, short follow-up, and limited high-quality evidence constrain causal inference and preclude conclusions regarding sustained clinical benefit.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 6","pages":"e200669"},"PeriodicalIF":3.7,"publicationDate":"2026-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13631877/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149112469","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":"The Neurology Workforce in American Medicine: Physicians, Physician Associates, and Nurse Practitioners.","authors":"Bryan D Walker, Elizabeth Piette, Nicholas M Hudak, Roderick S Hooker","doi":"10.1212/CPJ.0000000000200655","DOIUrl":"10.1212/CPJ.0000000000200655","url":null,"abstract":"<p><strong>Background and objectives: </strong>The aim of this study was to establish a census of neurology clinicians by demographic and geographic points of care. Neurology clinicians include physicians, physician associates (PAs), and nurse practitioners (NPs).</p><p><strong>Methods: </strong>Veeva OpenData, a comprehensive database of healthcare professionals typically licensed by pharmaceutical companies for commercial, field medical, and clinical activities, served as the data source. Information accessed from Veeva OpenData included the demographics of neurology clinicians and secondary specialties.</p><p><strong>Results: </strong>The Veeva OpenData neurology workforce cohort includes 24,950 licensed clinicians across the United States and its territories as of March 2025. This group comprises 20,196 physicians, 1,502 PAs, and 3,252 NPs. These 3 groups differ in their geographic distribution, urban-rural setting, and gender distribution. Regarding sex, physicians were predominantly male (65.26%), whereas PAs and NPs included substantially lower proportions of men (13.58% and 6.12%, respectively).</p><p><strong>Discussion: </strong>This study provides an overview of the current neurology workforce that is more granular and exceeds the detail of traditional sources, including the American Academy of Neurology and the Bureau of Labor Statistics. Further research is required to assess the demand for neurology services and model future workforce needs, particularly for PAs and NPs.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 6","pages":"e200655"},"PeriodicalIF":3.7,"publicationDate":"2026-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13621339/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149075261","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":"Psychiatric Outcomes of Antiseizure Medications in Newly Diagnosed Focal Onset Epilepsy: From the Human Epilepsy Project Cohort Study.","authors":"Hamada Hamid Altalib, Poojith Nuthalapati, Zhiyuan Zhang, Margaret T Gopaul, Andres M Kanner, Barry E Gidal","doi":"10.1212/CPJ.0000000000200645","DOIUrl":"10.1212/CPJ.0000000000200645","url":null,"abstract":"<p><strong>Background and objectives: </strong>Psychiatric comorbidities are highly prevalent in people with epilepsy, which adversely affect treatment outcomes. The proper choice of antiseizure medication (ASM) is therefore crucial because different ASMs have varying psychiatric safety profiles. This study investigates the psychiatric tolerability of commonly used ASMs in people with newly diagnosed focal epilepsy.</p><p><strong>Methods: </strong>This post hoc analysis included participants from the Human Epilepsy Project, an international, multicenter prospective cohort. Of 357 participants aged ≥12 years enrolled within 4 months of treatment initiation for focal epilepsy, those receiving levetiracetam, lamotrigine, or sodium channel blockers (SCBs, including carbamazepine, oxcarbazepine, and phenytoin) monotherapy who completed the Mini International Neuropsychiatric Interview at enrollment were included. Median doses at discontinuation for each treatment group were reported.</p><p><strong>Results: </strong>Of 357 patients, 214 (60%) received levetiracetam, 69 (19%) lamotrigine, and 74 (21%) other SCBs. Treatment groups differed significantly by sex (<i>p</i> = 0.028) and education level (<i>p</i> = 0.001). During the 2-year follow-up, levetiracetam and other SCBs had a significantly higher risk of withdrawal because of psychiatric adverse events compared with lamotrigine (<i>p</i> = 0.001 and <i>p</i> = 0.024, respectively). Most withdrawals occurred early. Multivariable Cox regression showed a higher withdrawal risk for levetiracetam vs lamotrigine (adjusted HR 2.76; 95% CI 1.51-5.04; <i>p</i> ≤ 0.001) and for other SCBs vs lamotrigine (adjusted HR 2.25; 95% CI 1.13-4.47; <i>p</i> = 0.021). Discontinuation doses were substantially lower than maintenance doses across all groups (<i>p</i> < 0.001 for levetiracetam and lamotrigine; <i>p</i> = 0.0022 for other SCBs). Among patients without baseline depression or anxiety (n = 232), discontinuation occurred in 40% of those receiving levetiracetam, 40% receiving other SCBs, and 19% receiving lamotrigine. Consistent with the overall cohort, levetiracetam was associated with a higher risk of discontinuation (OR 2.40 [1.18-5.20], <i>p</i> = 0.020) compared with lamotrigine.</p><p><strong>Discussion: </strong>People who were newly diagnosed with focal epilepsy on ASM monotherapy showed that levetiracetam was associated with approximately 2.8-fold risk of treatment withdrawal compared with lamotrigine because of psychiatric adverse events. Our analysis also demonstrated a better psychiatric tolerability profile for lamotrigine compared with other SCBs. Most discontinuations occurred at significantly lower doses than maintenance therapy, suggesting either failure to reach therapeutic dosing or dose tapering before discontinuation.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200645"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13459702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148707259","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":"A Faster Way to Diagnose Multiple Sclerosis: The Central Vein Sign in Routine Clinical Practice.","authors":"Christopher G S Gilmartin, Thomas Paskin, Margareta A Clarke, Blanca De Dios Peréz, Paul Morgan, Rob A Dineen, Nikos Evangelou","doi":"10.1212/CPJ.0000000000200647","DOIUrl":"10.1212/CPJ.0000000000200647","url":null,"abstract":"<p><strong>Background: </strong>The central vein sign (CVS) was included in 2024 McDonald criteria but remains underutilized in clinical practice. Implementation of CVS may reduce the requirement for lumbar punctures (LPs). At Nottingham, UK academic multiple sclerosis (MS) center, we implemented a fast-track (FT) pathway incorporating CVS analysis for people referred with imaging suggestive of MS as part of a quality improvement project. We retrospectively reviewed consecutive patients diagnosed with MS referred between March 1, 2024, and July 31, 2025.</p><p><strong>Recent findings: </strong>Data from 59 consecutive patients were analyzed. The mean time to diagnosis was 2.9 months in FT pathway and 5.6 months in usual outpatient pathway (Student <i>t</i> test mean 83-day difference, <i>p</i> = 0.003). No people with MS in FT pathway received a LP. The mean cost per patient was £707 (FT) vs £999 (outpatient).</p><p><strong>Implications: </strong>Routine application of CVS within a structured diagnostic pathway accelerated diagnosis, eliminated LPs, and reduced costs. Our findings support a broader adoption of CVS to streamline MS workup.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200647"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13436856/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148670241","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":"Three-Year Mortality After First Acute Symptomatic Seizure: A Prospective, Population-Based Study in Ireland.","authors":"Michael J Murphy, Eimer M Maloney, Jessica Stack, Éilis J O'Reilly, Daniel J Costello","doi":"10.1212/CPJ.0000000000200646","DOIUrl":"10.1212/CPJ.0000000000200646","url":null,"abstract":"<p><strong>Background and objectives: </strong>Acute symptomatic seizures (ASyS) are clinical seizures occurring at the time of a systemic insult or in close temporal association with a documented brain injury. We aimed to determine the 3-year mortality following a first ASyS.</p><p><strong>Methods: </strong>We previously conducted a prospective, population-based cohort comprising all individuals with a first seizure during 2017 from a defined geographic area. Individuals with ASyS were identified from this cohort using ILAE criteria and stratified by provoking factor. Mortality was assessed at 30 days, 1 year, and 3 years following the event, and age-standardized mortality ratios (SMRs) were calculated at 1 and 3 years using age-matched and sex-matched national mortality data.</p><p><strong>Results: </strong>Among 207 cases of first ASyS, identified from a population of 542,868, there were 61 deaths (29.5%) during 3 years of follow-up. Mortality at 30 days, 1 year, and 3 years was 12.6%, 22.2%, and 29.5%, respectively. The SMR was 19.7 (95% CI 14.4-26.3) at 1 year and 10.4 (95% CI 7.9-13.4) at 3 years. Mean age at first ASyS was 52.1 years and at death 70.5 years. Excluding the substance use group, 3-year mortality rose to 45.5% (50/110). Pneumonia was the most frequent cause of death (17/61, 27.9%).</p><p><strong>Discussion: </strong>ASyS is a common presentation and is associated with markedly increased mortality over 3 years. These findings underscore the prognostic importance of ASyS as a clinical indicator of increased long-term mortality, particularly in medically complex patients.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200646"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13459700/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148707227","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":"The AIMS Clinic Model: A Retrospective Analysis of Interdisciplinary Movement-Neuropalliative Care for People With Late-Stage Parkinsonism.","authors":"Mariya Husain, Angela Hong, Marla E Tharp, Yuqing Chen, Aamina Naveed, Sarah Kee, Deepa H Shankar, Sarah Mitchell Chen, Grace Hong, Kristin A Gustashaw, Bichun Ouyang, Neha M Kramer, Jori E Fleisher","doi":"10.1212/CPJ.0000000000200652","DOIUrl":"10.1212/CPJ.0000000000200652","url":null,"abstract":"<p><strong>Background and objectives: </strong>Patients with late-stage parkinsonism face complex, progressive symptoms requiring specialized interdisciplinary care, yet the unique needs of these patients and family care partners are often inadequately addressed in standard neurology practice. Evidence supporting innovative palliative care models for late-stage movement disorders remains limited. Although interdisciplinary movement-palliative clinics have expanded over the past decade, many provide consultation-only services, lack longitudinal follow-up, meet infrequently, or face sustainability challenges. We describe the Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) clinic, established in 2019, which delivers both consultative and longitudinal follow-up care tailored to meet the unique needs of this patient population.</p><p><strong>Methods: </strong>We describe the structure, workflow, and services of the AIMS clinic and present a retrospective review of patients seen between 2019 and 2023. Charts were systematically revied with relevant data extracted from documentation by the team, comprised of a movement disorders neurologist and fellows, neuropalliative care specialist, social worker, dietitian, and nurse. Data analyzed included demographics, initial and revised diagnoses, quality-of-life measures, morbidity, place of death, and hospice utilization at the time of death.</p><p><strong>Results: </strong>Among 175 consecutive patients seen between 2019 and 2023 (568 total visits), 78.7% were White; 57.7% male, with an average age of 72.8 (SD 11.9) years; and 97.5% were accompanied by a care partner. The most common diagnoses were Parkinson disease (42.3%), dementia with Lewy bodies (17.1%), and multiple system atrophy (12.6%). The median time from symptom onset to initial AIMS clinic visit was 7 years (range 1.0-31.0). Among 58 deceased patients, 40 (69.0%) were enrolled in hospice at the time of death.</p><p><strong>Discussion: </strong>This clinic highlights the feasibility and value of a longitudinal, outpatient interdisciplinary movement-neuropalliative care model for individuals living with late-stage parkinsonism-a group that is frequently lost to follow-up in traditional care pathways. Nearly 200 patients with late-stage disease were engaged in sustained care, and hospice utilization at the time of death substantially exceeded rates reported in usual care. Forthcoming analyses of symptom burden, quality-of-life trajectories, and end-of-life care will further inform best practices for comprehensive management in late-stage parkinsonism care.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200652"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13574323/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148945360","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":"Treat the Brain, Not the Clock.","authors":"Penina Krieger, Rose Healy, Thanh N Nguyen","doi":"10.1212/CPJ.0000000000200671","DOIUrl":"10.1212/CPJ.0000000000200671","url":null,"abstract":"","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200671"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13574322/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148945367","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":"Priorities to Improve Caregiving Experiences in Parkinson Disease: A Qualitative Study of Multiple Stakeholders.","authors":"Sandhya Seshadri, Betty Ferrell, Whitley W Aamodt, Angela Contento, Benzi M Kluger","doi":"10.1212/CPJ.0000000000200649","DOIUrl":"10.1212/CPJ.0000000000200649","url":null,"abstract":"<p><strong>Background and objectives: </strong>Parkinson disease (PD) and other Lewy body disorders are leading contributors to carer distress. In clinical settings, carer needs are not well understood or routinely discussed. When addressed, the focus tends to be on caregiver burden, a broad term that may limit clinicians' ability to provide meaningful support. This study aimed to investigate the priorities of key stakeholders, namely, persons with PD (PwP), informal unpaid carers such as spouses of PwP, and paid caregivers, to help facilitate the development of more targeted, holistic carer support.</p><p><strong>Methods: </strong>Using a qualitative descriptive research design, virtual semistructured interviews and one focus group were conducted with PwP, informal unpaid carers, and paid caregivers. Data collection and analyses were iterative, and a thematic analysis of coded data was completed.</p><p><strong>Results: </strong>Participants included 10 PwP (60% female, 90% White), 8 informal carers (100% female, 87.5% White), and 6 paid caregivers (75% female, 50% White). Four themes on the perceptions of PD caregiving were identified that highlighted current caregiving priorities. (1) Prior discussions on caregiving roles and expectations are important. Conversations between PwP and carers on the carer's role and individual expectations of caregiving were recognized as foundational to optimal caregiving. (2) The minutiae of caregiving exacerbate caregiver burnout and strain. Routine caregiving tasks and lack of decision-making support contributed to carer burnout and PwP frustrations. (3) Asking for and receiving help with caregiving can be hard for carers and patients. While carers and PwP were reluctant to ask for help, paid caregivers encouraged strategies to do so. (4) Caring and love lie at the core of caregiving. The challenges of PD caregiving were offset by feelings of mutuality of love and care.</p><p><strong>Discussion: </strong>Focused discussions on carer roles and expectations are foundational to improving caregiving experiences. Providing support for these discussions in clinical settings, offering help, and intentionally shifting the focus from burden to the positive aspects of caregiving may foster purpose and resilience among PD carers. Future research should include perspectives of varied stakeholders engaged in providing and receiving care and explore clinical interventions to address carer priorities.</p>","PeriodicalId":19136,"journal":{"name":"Neurology. Clinical practice","volume":"16 5","pages":"e200649"},"PeriodicalIF":3.7,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13393133/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148549881","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}