Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration最新文献

The correlation between social support, coping style, advance care planning readiness, and quality of life in patients with amyotrophic lateral sclerosis: a cross-sectional study. 肌萎缩性脊髓侧索硬化症患者的社会支持、应对方式、预先护理计划准备程度和生活质量之间的相关性：一项横断面研究。

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-18 DOI: 10.1080/21678421.2024.2400520

Zhijie Zhang,Xin He,Jing Wang,Jialu Cui,Baoxin Shi

{"title":"The correlation between social support, coping style, advance care planning readiness, and quality of life in patients with amyotrophic lateral sclerosis: a cross-sectional study.","authors":"Zhijie Zhang,Xin He,Jing Wang,Jialu Cui,Baoxin Shi","doi":"10.1080/21678421.2024.2400520","DOIUrl":"https://doi.org/10.1080/21678421.2024.2400520","url":null,"abstract":"OBJECTIVEThe primary goal for clinical healthcare professionals is to enhance the quality of life (QOL) of patients with amyotrophic lateral sclerosis (ALS). This study aimed to explore the correlation between social support, coping style, advance care planning (ACP) readiness, and QOL in patients with ALS. We also sought to analyze the mediating effect of coping style and ACP readiness between social support and QOL, and to provide insights for developing targeted interventions to improve patients' QOL.METHODSA cross-sectional design was used, with participants recruited through convenience sampling in Tianjin, China. Statistical analysis included the t-test, analysis of variance, correlation analysis, and mediating effect analysis.RESULTSThe study included 215 participants. The QOL of patients with ALS was at a medium level, with significant correlations between social support, coping style, ACP readiness, and QOL (all p < 0.01). The direct effect of social support on QOL was 0.403 (p = 0.018), accounting for 41.85% of the total effect. The total indirect effect of social support on QOL through coping style and ACP readiness was 0.560 (p < 0.001), accounting for 58.15% of the total effect. The chain mediating effect involving facing, avoiding, and ACP readiness accounted for 16.72%.CONCLUSIONSocial support directly influenced QOL and had an indirect impact through coping style and ACP readiness. Healthcare professionals can improve the QOL of patients with ALS by enhancing social support, disease-coping ability, and ACP readiness in clinical practice.","PeriodicalId":7740,"journal":{"name":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration","volume":"26 1","pages":"1-8"},"PeriodicalIF":2.8,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142268209","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Effects of COVID-19 on motor neuron disease mortality in the United States: a population-based cross-sectional study COVID-19 对美国运动神经元疾病死亡率的影响：基于人群的横断面研究

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-14 DOI: 10.1080/21678421.2024.2401621

Jaime Raymond, James D. Berry, Theodore Larson, D. Kevin Horton, Paul Mehta

引用次数: 0

SOD1 gene screening in ALS – frequency of mutations, patients’ attitudes to genetic information and transition to tofersen treatment in a multi-center program 肌萎缩性脊髓侧索硬化症（ALS）的 SOD1 基因筛查 - 突变频率、患者对遗传信息的态度以及多中心项目中向托非森治疗的转变

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-13 DOI: 10.1080/21678421.2024.2401131

Thomas Meyer, Peggy Schumann, Torsten Grehl, Ute Weyen, Susanne Petri, Annekathrin Rödiger, Robert Steinbach, Julian Grosskreutz, Sarah Bernsen, Patrick Weydt, Joachim Wolf, René Günther, Maximilian Vidovic, Petra Baum, Moritz Metelmann, Jochen H. Weishaupt, Berthold Streubel, David C. Kasper, Yasemin Koc, Dagmar Kettemann, Jenny Norden, Philipp Schmitt, Bertram Walter, Christoph Münch, Susanne Spittel, André Maier, Péter Körtvélyessy

引用次数: 0

A nurse coaching intervention to improve support to individuals living with ALS. 护士指导干预，改善对 ALS 患者的支持。

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-11 DOI: 10.1080/21678421.2024.2399154

Susan Walsh,Zachary Simmons,Sheridan Miyamoto,Andrew Geronimo

{"title":"A nurse coaching intervention to improve support to individuals living with ALS.","authors":"Susan Walsh,Zachary Simmons,Sheridan Miyamoto,Andrew Geronimo","doi":"10.1080/21678421.2024.2399154","DOIUrl":"https://doi.org/10.1080/21678421.2024.2399154","url":null,"abstract":"OBJECTIVEHealth coaching may supplement the multidisciplinary ALS clinic model to facilitate patient-centered health behavior change. The aim of this study was to determine the effects of nurse health coaching (NHC) on the quality of life and self-efficacy of individuals living with ALS.METHODSTwenty-nine participants were randomized at 1:1 to the standard of care and coaching arms. All participants attended multidisciplinary ALS clinic visits quarterly, at which times they completed assessments of quality of life and self-efficacy. Those in the coaching arm participated in monthly coaching with a nurse coach over 12 months. The coaching sessions utilized motivational interviewing to identify personal goals along with barriers and solutions to achieve them. Linear mixed-effect models were used to quantify the effect of coaching on quality of life and self-efficacy outcomes. Thematic analysis was performed to summarize the participants' experiences with coaching.RESULTSAdherence to the coaching intervention was good. No effects of coaching were observed on the primary outcomes of quality of life and self-efficacy, although debriefed participants reported that they would recommend it to others. Patients and caregivers reflected on the impacts of coaching that extended beyond the pre-defined study outcomes and measures put in place to gauge effectiveness.CONCLUSIONSThe elicited qualitative themes illustrating patient experience of coaching demonstrate the utility of nurse coaching as an important adjunct support to complement the multidisciplinary ALS clinic model.","PeriodicalId":7740,"journal":{"name":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration","volume":"188 1","pages":"1-7"},"PeriodicalIF":2.8,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142187769","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

How to break the news in amyotrophic lateral sclerosis/motor neuron disease: practical guidelines from experts 如何发布肌萎缩侧索硬化症/运动神经元疾病的消息：专家提供的实用指南

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-11 DOI: 10.1080/21678421.2024.2397517

Colleen O’Connell, Melinda S. Kavanaugh, Cathy Cummings, Angela Genge

引用次数: 0

Acceptability and potential benefit of a self-compassion intervention for people living with amyotrophic lateral sclerosis: a mixed methods pilot study. 对肌萎缩性脊髓侧索硬化症患者进行自我同情干预的可接受性和潜在益处：一项混合方法试点研究。

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-11 DOI: 10.1080/21678421.2024.2400516

Marion Sommers-Spijkerman,Aimée Zwarts-Engelbert,Esther Kruitwagen-Van Reenen,Ruben P A Van Eijk,Johanna M A Visser-Meily,Emmy Heijmans,Judith Austin,Constance Drossaert,Ernst Bohlmeijer,Anita Beelen

{"title":"Acceptability and potential benefit of a self-compassion intervention for people living with amyotrophic lateral sclerosis: a mixed methods pilot study.","authors":"Marion Sommers-Spijkerman,Aimée Zwarts-Engelbert,Esther Kruitwagen-Van Reenen,Ruben P A Van Eijk,Johanna M A Visser-Meily,Emmy Heijmans,Judith Austin,Constance Drossaert,Ernst Bohlmeijer,Anita Beelen","doi":"10.1080/21678421.2024.2400516","DOIUrl":"https://doi.org/10.1080/21678421.2024.2400516","url":null,"abstract":"Objective: This proof-of-concept study aimed to explore the acceptability and potential benefit of a self-guided online self-compassion intervention to aid resilient coping and reduce emotional distress among patients and caregivers living with ALS. Methods: A single-arm pilot study was conducted in 20 adults living with ALS either as a patient or as a caregiver. Acceptability was examined using questionnaires (n = 20) and semi-structured interviews (n = 9). Potential benefit was assessed as changes in self-compassion, self-criticism and emotional distress, determined using psychological questionnaires at 3 and 6 weeks. Questionnaires were analyzed using linear mixed-effects models and interview data using inductive thematic analysis. Results: Out of 20 participants who started the intervention, 16 completed the study (80%). The majority of study completers (12/16) were satisfied with the intervention, but the data suggest room for improvement in terms of personalization. Qualitative data revealed multiple psychological benefits of using the intervention, including self-kindness, emotional self-awareness and savoring. Although not statistically significant, quantitative data showed positive trends with increased self-compassion (mean difference: 2.07; 95% CI: -.5.76 - 1.63) and reduced self-criticism (mean difference: -2.62; 95% CI: -.1.97 - 7.23) and emotional distress (mean difference: -2.49; 95% CI: -.51 - 5.50) at week 6 compared to baseline. Conclusions: The findings suggest that a self-compassion intervention is acceptable to people living with ALS, but its beneficial effects and the mechanisms involved have yet to be established in larger and more diverse samples, using controlled designs.","PeriodicalId":7740,"journal":{"name":"Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration","volume":"311 1","pages":"1-11"},"PeriodicalIF":2.8,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142224518","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

A scoping review of the role of managed entry agreements in upcoming drugs for amyotrophic lateral sclerosis: learning from the case of spinal muscular atrophy 关于管理下进入协议在即将上市的肌萎缩性脊髓侧索硬化症药物中的作用的范围审查：从脊髓性肌萎缩症案例中汲取经验

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-10 DOI: 10.1080/21678421.2024.2400522

Beliu García-Parra, Josep M. Guiu, MÓnica Povedano, Pilar Modamio

引用次数: 0

Cognitive reserve in ALS: the role of occupational skills and requirements ALS 的认知储备：职业技能和要求的作用

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-04-09 DOI: 10.1080/21678421.2024.2336113

Emma Rhodes, Sebleh Alfa, Hannah A. Jin, Lauren Massimo, Lauren Elman, Defne Amado, Michael Baer, Colin Quinn, Corey T. McMillan

引用次数: 0

Case-control study of environmental toxins and risk of amyotrophic lateral sclerosis involving the national ALS registry 环境毒素与肌萎缩性脊髓侧索硬化症风险的病例对照研究，涉及全国肌萎缩性脊髓侧索硬化症登记处

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-04-09 DOI: 10.1080/21678421.2024.2336108

Evelyn O. Talbott, Angela M. Malek, Vincent C. Arena, Fan Wu, Kristen Steffes, Ravi K. Sharma, Jeanine Buchanich, Judith R. Rager, Todd Bear, Caroline A. Hoffman, David Lacomis, Chris Donnelly, Jocelyn Mauna, John E. Vena

引用次数: 0

Assessing pulmonary function in ALS using electrical impedance tomography 利用电阻抗断层扫描评估 ALS 的肺功能

IF 2.8 4区医学

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-04-04 DOI: 10.1080/21678421.2024.2334075

Seward B. Rutkove, Courtney E. McIlduff, Elijah Stommel, Sean Levy, Christy Smith, Hilda Gutierrez, Sarah Verga, Soleil Samaan, Chebet Yator, Ajitesh Nanda, Lisa Pastel, Allaire Doussan, Kathy Phipps, Ethan Murphy, Ryan Halter

引用次数: 0