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The reality and future of home visit care from an economic point of view 从经济角度看家访护理的现实与未来
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-11 DOI: 10.53991/jgn.2023.00017
D. Oh
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引用次数: 0
The Impact of the COVID-19 Pandemic on Informal Caregivers of People With Parkinson's Disease Residing in the UK: A Qualitative Study. COVID-19大流行对居住在英国的帕金森病患者的非正式照顾者的影响:一项定性研究
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221135555
Daniel Rippon, Annette Hand, Lorelle Dismore, Roberta Caiazza

Informal caregivers can experience various demands when providing care and support for People with Parkinson's disease (PwP) in their own homes. The outbreak of SARS-CoV-2 and public health strategies employed to mitigate the spread of COVID-19 have presented challenges to the general populace on a global basis. The present study used a qualitative research design to explore how the COVID-19 pandemic has impacted informal caregivers in their role of providing care for PwP in their own homes. A series of 1:1 semi-structured interviews were conducted with 11 informal caregivers of PwP (M age = 72.64 years, SD = 8.94 years). A thematic analysis indicated that 1) vulnerabilities to COVID-19, 2) home maintenance & activities of daily living and 3) engagement with healthcare services were 3 themes that provided indications on how the COVID-19 pandemic impacted informal caregivers of PwP. The present study provides illustrations of how being an informal caregiver of PwP and being identified as high risk to COVID-19 can present challenges to the process of caring for loved ones who are also vulnerable to SARS-CoV-2. The results of the present study highlights the necessity to develop strategies to ensure that informal caregivers have the necessary resources to provide care for PwP in their homes and also maintain their own well-being in the post COVID-19 era.

非正式照护者在自己家中为帕金森病患者提供照护和支持时,可能会遇到各种需求。SARS-CoV-2的爆发和为缓解COVID-19传播而采取的公共卫生战略给全球普通民众带来了挑战。本研究采用定性研究设计,探讨COVID-19大流行如何影响非正规护理人员在自己家中为残疾人提供护理的角色。对11名PwP非正式护理人员(M年龄= 72.64岁,SD = 8.94岁)进行了一系列1:1半结构化访谈。专题分析表明,1)对COVID-19的脆弱性,2)家庭维护和日常生活活动以及3)参与医疗保健服务是3个主题,说明了COVID-19大流行如何影响PwP的非正式护理人员。本研究提供了一些例子,说明作为PwP的非正式护理人员并被确定为COVID-19的高风险,如何给照顾同样容易感染SARS-CoV-2的亲人的过程带来挑战。本研究的结果强调了制定战略的必要性,以确保非正规护理人员拥有必要的资源,在家中为残疾人提供护理,并在COVID-19后时代维持其自身的福祉。
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引用次数: 4
Family Carers of People with Dementia in Japan, Spain, and the UK: A Cross-Cultural Comparison of the Relationships between Experiential Avoidance, Cognitive Fusion, and Carer Depression. 日本、西班牙和英国痴呆症患者的家庭照顾者:经验回避、认知融合和照顾者抑郁关系的跨文化比较
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221130269
Naoko Kishita, Hiroshi Morimoto, María Márquez-González, Samara Barrera-Caballero, Carlos Vara-García, Elien Van Hout, Milena Contreras, Andrés Losada-Baltar

Objective and research design This study investigated whether the relationship between experiential avoidance and carer depression is mediated by cognitive fusion using path analysis and whether this model differs between family carers from Japan, Spain, and the UK using multi-group path analysis. Results The whole sample model (N = 745) showed a good fit to the data. The direct effect of experiential avoidance on carer depression (β = .10) and its indirect effect on carer depression through cognitive fusion (β = .15) were significant. Examined variables accounted for 45% of the variance of depression. Multi-group path analysis confirmed the same pattern of indirect path across 3 countries, while the direct path was no longer significant in Spanish and UK samples.Conclusion These findings suggest that targeting cognitive fusion may be particularly critical in culturally diverse carers and pre-emptive efforts to reduce experiential avoidance using psychological techniques may be beneficial among family carers prone to cognitive fusion regardless of cultural differences.

目的与研究设计本研究通过通径分析探讨了体验回避与照顾者抑郁之间是否存在认知融合的中介关系,并通过多组通径分析探讨了日本、西班牙和英国家庭照顾者的认知融合模型是否存在差异。结果全样本模型(N = 745)与数据拟合良好。体验回避对照顾者抑郁的直接影响(β = 0.10)和通过认知融合对照顾者抑郁的间接影响(β = 0.15)显著。被检查的变量占抑郁症方差的45%。多组路径分析证实了3个国家间间接路径的相同模式,而在西班牙和英国的样本中,直接路径不再显著。这些研究结果表明,针对不同文化背景的家庭照顾者的认知融合可能尤为重要,而使用心理技术先发制人地减少经验回避可能对倾向于认知融合的家庭照顾者有益,而不管文化差异如何。
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引用次数: 1
Demographic and Symptom Correlates of Initial Idiopathic Psychiatric Diagnosis in Frontotemporal Dementia. 前额颞叶痴呆症患者初始特发性精神病诊断的人口统计学和症状相关性。
IF 2.9 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 Epub Date: 2022-11-07 DOI: 10.1177/08919887221130267
Corinne Sejourne, Jordan D Dworkin, Megan S Barker, Masood Manoochehri, Reena T Gottesman, Eric M Wassermann, Michael C Tierney, Edward D Huey, Jordan Grafman

Introduction: This study aims to measure frequency and correlates of initial idiopathic psychiatric diagnosis in a cohort of 147 patients with Frontotemporal Dementia (FTD)-spectrum disorders.

Methods: Participants were evaluated at the National Institutes of Health in Bethesda, Maryland. Initial participant diagnoses were determined by chart review and patient and informant interviews. Logistic regression was used to assess the relationships between diagnosis and age of symptom onset, gender, education, family history of psychiatric illness, and family history of dementia. Additional exploratory analyses investigated patients' first symptom type.

Results: 25% (n=43) of all the patients reviewed were initially misdiagnosed with an idiopathic psychiatric illness, which is less than half the commonly cited 50% rate.3 Depression was the most common misdiagnosis (46.5%). Family history of dementia, family history of mental illness and an exploratory analysis of behavioral first symptoms suggested significant association with a greater likelihood of initial idiopathic psychiatric diagnosis in FTD patients.

Discussion: This data confirms patterns of initial idiopathic psychiatric diagnosis in FTD and elucidates potential factors underlying misdiagnosis. Potential implications for patient outcomes, caregiver burden and healthcare costs are discussed.

简介:本研究旨在测量 147 名前额颞叶痴呆症(FTD)谱系障碍患者初始特发性精神病诊断的频率和相关性:本研究旨在测量147名前额颞叶痴呆症(FTD)谱系障碍患者的初始特发性精神病诊断的频率和相关性:参与者在马里兰州贝塞斯达的美国国立卫生研究院接受评估。参与者的初步诊断是通过病历审查、患者和知情者访谈确定的。采用逻辑回归法评估诊断与发病年龄、性别、教育程度、精神病家族史和痴呆症家族史之间的关系。其他探索性分析还调查了患者的首发症状类型。结果:在所有接受审查的患者中,25%(n=43)的患者最初被误诊为特发性精神病,这还不到通常所说的 50%误诊率的一半。痴呆症家族史、精神病家族史以及行为学首发症状的探索性分析表明,FTD 患者更有可能被诊断为特发性精神病:讨论:这些数据证实了FTD患者初始特发性精神病诊断的模式,并阐明了误诊的潜在因素。讨论:这些数据证实了 FTD 患者最初的特发性精神病诊断模式,并阐明了误诊的潜在因素,讨论了其对患者预后、护理人员负担和医疗成本的潜在影响。
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引用次数: 0
The Effect of the Art Therapy Interventions on Depression Symptoms Among Older Adults: A Meta-analysis of Controlled Clinical Trials. 艺术治疗干预对老年人抑郁症状的影响:一项对照临床试验的荟萃分析
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221130264
Ensiyeh Jenabi, Saeid Bashirian, Erfan Ayubi, Masoud Rafiee, Mozhdeh Bashirian

Background: To our knowledge, no systematic reviews and meta-analyses have yet been published that examine the effect of art therapy (AT) interventions on depression symptoms among older adults, and this study aimed to systematically review and meta-analysis of clinical trials, summarize eligible relevant studies and provide a true effect measure for the association between AT and depression symptoms in older adults.

Methods: The databases of PubMed, Web of Science, Scopus, and the Cochrane Central Register of Controlled Trials were searched until 15 February 2022. The methodological quality of the included studies was evaluated by the Delphi checklist. The heterogeneity across studies was conducted by chi-squared test and measured its quantity by the I2 statistic. We performed this meta-analysis to obtain a summary measure of the mean difference in depression scores between AT and control groups using a random-effects model. All statistical analyses were carried out at a significance level of .05 using Stata software, version 14.

Results: Until 15 February 2022, 222 studies through databases and 199 studies through review of references were included in the present meta-analysis. In total, the analysis covered 8 studies. The difference in mean depression score between the intervention and control groups showed significant reductions in the AT group (MD -.78; 95% CI: -1.17, -.38; I 2 = 67.9%).

Conclusion: Our findings suggest that AT can be considered an effective intervention for reducing depression symptoms among older adults and art therapists/psychotherapists can use this method to reduce the symptoms of depression among older adults.

背景:据我们所知,目前还没有关于艺术治疗(art therapy, AT)干预对老年人抑郁症状影响的系统综述和荟萃分析发表,本研究旨在对临床试验进行系统回顾和荟萃分析,总结符合条件的相关研究,为老年人艺术治疗与抑郁症状之间的关系提供一个真实的效果测量。方法:截至2022年2月15日,检索PubMed、Web of Science、Scopus和Cochrane Central Register of Controlled Trials数据库。纳入研究的方法学质量通过德尔菲检查表进行评估。各研究间异质性采用卡方检验,异质性量采用I2统计量。我们使用随机效应模型进行meta分析,以获得AT组和对照组之间抑郁评分平均差异的总结度量。所有统计分析均采用Stata软件第14版,显著性水平为0.05。结果:截至2022年2月15日,本荟萃分析纳入了222项数据库研究和199项文献综述研究。总的来说,该分析涵盖了8项研究。干预组和对照组的平均抑郁评分差异显示,AT组显著降低(MD - 0.78;95% ci: -1.17, - 0.38;i2 = 67.9%)。结论:我们的研究结果表明,AT可以被认为是减轻老年人抑郁症状的有效干预措施,艺术治疗师/心理治疗师可以使用这种方法减轻老年人抑郁症状。
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引用次数: 3
Psychological Factors Associated With Fear of Falling Avoidance Behavior in Parkinson's Disease: The Role of Depression, Anxiety, and Catastrophizing. 帕金森氏症患者害怕避免跌倒行为的相关心理因素:抑郁、焦虑和灾难化的作用
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221119974
John V Rider, Jason K Longhurst, Nirmala Lekhak, James W Navalta, Daniel L Young, Merrill R Landers

Purpose: The purpose of this study was to examine the relationship between psychological factors (depression, anxiety, and catastrophizing) and fear of falling avoidance behavior (FFAB) among individuals with Parkinson's disease (PD).

Methods: A secondary analysis of cross-sectional data from 59 individuals with PD using hierarchical multiple regression.

Results: Disease severity (Movement Disorder Society - Unified PD Rating Scale) and catastrophizing (Consequences of Falling Questionnaire (CoF)) explained approximately 48.2% of the variance in the FFAB Questionnaire scores (P < .001). Catastrophizing was the only significant psychological variable (P < .001). The damage to identity subscale of the CoF was significant in the final model (P < .001).

Conclusions: Catastrophizing about the consequences of falls explained the largest portion of variability in FFAB after controlling for disease severity. Catastrophizing about the immediate consequences of falling may play a prominent role in FFAB and may be a potential treatment target for mitigating FFAB.

目的:本研究的目的是探讨心理因素(抑郁、焦虑和灾难化)与帕金森病(PD)患者害怕避免跌倒行为(FFAB)之间的关系。方法:采用分层多元回归对59例PD患者的横断面资料进行二次分析。结果:疾病严重程度(运动障碍学会-统一PD评定量表)和灾难化(跌倒后果问卷(CoF))解释了FFAB问卷得分约48.2%的方差(P < 0.001)。灾难化是唯一显著的心理变量(P < 0.001)。在最终模型中,CoF的身份亚量表损伤显著(P < 0.001)。结论:在控制疾病严重程度后,对跌倒后果的灾难化解释了FFAB变异的最大部分。对摔倒的直接后果的灾难化可能在FFAB中起重要作用,可能是减轻FFAB的潜在治疗靶点。
{"title":"Psychological Factors Associated With Fear of Falling Avoidance Behavior in Parkinson's Disease: The Role of Depression, Anxiety, and Catastrophizing.","authors":"John V Rider,&nbsp;Jason K Longhurst,&nbsp;Nirmala Lekhak,&nbsp;James W Navalta,&nbsp;Daniel L Young,&nbsp;Merrill R Landers","doi":"10.1177/08919887221119974","DOIUrl":"https://doi.org/10.1177/08919887221119974","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this study was to examine the relationship between psychological factors (depression, anxiety, and catastrophizing) and fear of falling avoidance behavior (FFAB) among individuals with Parkinson's disease (PD).</p><p><strong>Methods: </strong>A secondary analysis of cross-sectional data from 59 individuals with PD using hierarchical multiple regression.</p><p><strong>Results: </strong>Disease severity (Movement Disorder Society - Unified PD Rating Scale) and catastrophizing (Consequences of Falling Questionnaire (CoF)) explained approximately 48.2% of the variance in the FFAB Questionnaire scores (<i>P</i> < .001). Catastrophizing was the only significant psychological variable (<i>P</i> < .001). The <i>damage to identity</i> subscale of the CoF was significant in the final model (<i>P</i> < .001).</p><p><strong>Conclusions: </strong>Catastrophizing about the consequences of falls explained the largest portion of variability in FFAB after controlling for disease severity. Catastrophizing about the immediate consequences of falling may play a prominent role in FFAB and may be a potential treatment target for mitigating FFAB.</p>","PeriodicalId":16028,"journal":{"name":"Journal of Geriatric Psychiatry and Neurology","volume":"36 3","pages":"215-224"},"PeriodicalIF":2.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9669035","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: 1
Dance-Specific Activity in People Living With Dementia: A Conceptual Framework and Systematic Review of Its Effects on Neuropsychiatric Symptoms. 痴呆症患者舞蹈特异性活动:概念框架及其对神经精神症状影响的系统评价
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221130268
Henning Schroeder, Peter Haussermann, Tim Fleiner

Objectives: Dance as a non-pharmacological therapy is commonly used in dementia care, although the evidence of its effects remains unclear. This study systematically reviewed the effects of dance interventions on neuropsychiatric symptoms (NPS) in people living with dementia. To systematically identify and evaluate dance interventions, a standardized terminology for Dance-Specific Activity (DSA) is proposed.

Methods: Literature search was conducted on electronic databases until April 30th 2021. Studies were included when they quantified the effects of DSA on NPS in people with clinical diagnosis of dementia. Included studies were analyzed in detail for NPS. Study quality was assessed by PEDro scale (German version).

Results: 4 studies were included. The studies differed in study design, intervention protocols, dance styles, or measurement tools, and were generally of low study quality. Two trials showed improvements in NPS and 2 trials showed no exacerbation of NPS after DSA.

Conclusions: The results of the 4 available trials indicate a positive tendency towards the effects of DSA, but considering the limitations of the few available studies, a clear statement about the effects of DSA is not possible yet. Based on the included trials, the following implications for clinical research and routine care can be derived: (1) DSA seems to be a practical terminology for identifying dance interventions (2) DSA seems to be a safe intervention for people living with dementia. (3) Different dance styles can be used. (4) DSA approaches should be better structured by differentiating between the domains type, content, intention, and protocol of the intervention.

目的:舞蹈作为一种非药物治疗通常用于痴呆症护理,尽管其效果的证据尚不清楚。本研究系统回顾了舞蹈干预对痴呆症患者神经精神症状(NPS)的影响。为了系统地识别和评估舞蹈干预,提出了舞蹈特定活动(DSA)的标准化术语。方法:到2021年4月30日,在电子数据库中进行文献检索。当他们量化DSA对临床诊断为痴呆的人的NPS的影响时,研究被纳入其中。纳入的研究对NPS进行了详细分析。采用PEDro量表(德文版)评价研究质量。结果:共纳入4项研究。这些研究在研究设计、干预方案、舞蹈风格或测量工具方面存在差异,研究质量普遍较低。两项试验显示NPS改善,两项试验显示DSA后NPS没有恶化。结论:现有的4项试验结果表明DSA的作用有积极的趋势,但考虑到现有研究的局限性,尚不能明确说明DSA的作用。根据纳入的试验,可以得出以下对临床研究和常规护理的影响:(1)DSA似乎是识别舞蹈干预的实用术语(2)DSA似乎是痴呆症患者的安全干预措施。(3)可以使用不同的舞蹈风格。(4)应通过区分干预的领域类型、内容、意图和协议,更好地构建DSA方法。
{"title":"Dance-Specific Activity in People Living With Dementia: A Conceptual Framework and Systematic Review of Its Effects on Neuropsychiatric Symptoms.","authors":"Henning Schroeder,&nbsp;Peter Haussermann,&nbsp;Tim Fleiner","doi":"10.1177/08919887221130268","DOIUrl":"https://doi.org/10.1177/08919887221130268","url":null,"abstract":"<p><strong>Objectives: </strong>Dance as a non-pharmacological therapy is commonly used in dementia care, although the evidence of its effects remains unclear. This study systematically reviewed the effects of dance interventions on neuropsychiatric symptoms (NPS) in people living with dementia. To systematically identify and evaluate dance interventions, a standardized terminology for Dance-Specific Activity (DSA) is proposed.</p><p><strong>Methods: </strong>Literature search was conducted on electronic databases until April 30<sup>th</sup> 2021. Studies were included when they quantified the effects of DSA on NPS in people with clinical diagnosis of dementia. Included studies were analyzed in detail for NPS. Study quality was assessed by PEDro scale (German version).</p><p><strong>Results: </strong>4 studies were included. The studies differed in study design, intervention protocols, dance styles, or measurement tools, and were generally of low study quality. Two trials showed improvements in NPS and 2 trials showed no exacerbation of NPS after DSA.</p><p><strong>Conclusions: </strong>The results of the 4 available trials indicate a positive tendency towards the effects of DSA, but considering the limitations of the few available studies, a clear statement about the effects of DSA is not possible yet. Based on the included trials, the following implications for clinical research and routine care can be derived: (1) DSA seems to be a practical terminology for identifying dance interventions (2) DSA seems to be a safe intervention for people living with dementia. (3) Different dance styles can be used. (4) DSA approaches should be better structured by differentiating between the domains <i>type, content, intention, and protocol of the intervention.</i></p>","PeriodicalId":16028,"journal":{"name":"Journal of Geriatric Psychiatry and Neurology","volume":"36 3","pages":"175-184"},"PeriodicalIF":2.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10641380","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
Do Adult Attachment Style or Personality Mediate the Relationship Between Childhood Maltreatment and Late-Life Depression in Poor Communities? 成人依恋类型或人格是否在贫困社区儿童虐待与晚年抑郁的关系中起中介作用?
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221119979
Gabriel Behr Gomes Jardim, Irenio Gomes, Gholam Mehdi, Setareh Ranjbar, Paula Engroff, Milena Antunes Santos, Alfredo Cataldo Neto, Armin von Gunten

Objective: Childhood maltreatment is associated with late-life depression. Preliminary evidence indicates that personality characteristics, in particular neuroticism and extroversion, and an anxious attachment style mediate this association. The objective is to evaluate 3 models, in which personality and attachment are considered mediators between childhood maltreatment and late-life depression in a socioeconomically disadvantaged Brazilian population.

Methods: This study included participants (n = 260) from socioeconomically disadvantaged neighborhoods of Porto Alegre, Brazil, who completed measures of childhood maltreatment (Childhood Trauma Questionnaire - CTQ), personality characteristics (NEO-Five Factor Inventory), attachment styles (Relationship Scales Questionnaire), and geriatric depression (Mini-International Neuropsychiatric Interview-Plus). General multiple and sequential mediation analyses were used to test for possible associations.

Results: Attachment anxiety but not attachment avoidance is a mediator between childhood maltreatment and geriatric depression. Neuroticism is a full mediator. At that, attachment anxiety was found to be a predictor of neuroticism. Finally, sequential mediation analysis shows a path from childhood maltreatment to geriatric depression through attachment anxiety and neuroticism.

Conclusions: The results suggest a pathway from childhood maltreatment to anxious attachment, which in turn predicts higher neuroticism that itself may favor late-life depression. This hypothesis could have implications for older adults living in low socioeconomic settings in that treating the high-risk group of maltreated children may help prevent late-life depression.

目的:儿童期虐待与老年抑郁症相关。初步证据表明,人格特征,特别是神经质和外向性,以及焦虑型依恋类型介导了这种关联。目的是评估三个模型,在这些模型中,人格和依恋被认为是社会经济上处于不利地位的巴西人群中童年虐待和晚年抑郁之间的中介。方法:本研究纳入了来自巴西阿雷格里港社会经济弱势社区的参与者(n = 260),他们完成了儿童虐待(儿童创伤问卷- CTQ)、人格特征(neo -五因素量表)、依恋类型(关系量表问卷)和老年抑郁症(迷你国际神经精神病学访谈- plus)的测量。一般多重和顺序中介分析用于检验可能的关联。结果:依恋焦虑在儿童虐待与老年抑郁之间起中介作用,而依恋回避不起作用。神经质是一个完全的中介。因此,依恋焦虑被发现是神经质的一个预测指标。最后,序贯中介分析显示童年虐待与老年抑郁之间存在依恋焦虑和神经质的关系。结论:研究结果表明,从童年虐待到焦虑依恋存在一条途径,而焦虑依恋反过来又预示着较高的神经质,而神经质本身可能会导致晚年抑郁。这一假设可能对生活在低社会经济环境中的老年人有启示,因为治疗受虐待儿童的高风险群体可能有助于预防晚年抑郁症。
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引用次数: 0
Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact. 与额颞叶变性共存:诊断历程、症状体验和疾病影响。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 Epub Date: 2022-08-09 DOI: 10.1177/08919887221119976
Megan S Barker, Shana G Dodge, Debra Niehoff, Sharon Denny, Penny A Dacks, Susan Dickinson, Stephanie Cosentino, Dianna K H Wheaton

Frontotemporal degeneration (FTD) is an umbrella term encompassing a range of rare neurodegenerative disorders that cause progressive declines in cognition, behavior, and personality. Hearing directly from individuals living with FTD and their care partners is critical in optimizing care, identifying meaningful clinical trial endpoints, and improving research recruitment and retention. The current paper presents a subset of data from the FTD Insights Survey, chronicling the diagnostic journey, symptoms, and the impact of FTD on distress, quality of life, and independence, in the mild to moderate stages of the disease. Survey respondents included 219 individuals diagnosed with FTD and 437 current care partners, representing a range of FTD diagnoses. Around half of survey respondents reported seeing three or more doctors before an FTD diagnosis was given, and a range of prior diagnoses were noted. Most frequently endorsed symptoms tended to be consistent with clinical characteristics of the specific diagnosis, though there was significant variability in symptoms reported within diagnostic categories as well as considerable overlap in symptoms between diagnostic categories. Cognitive and language symptoms of FTD were generally most distressing to the person diagnosed, and a loss of independence was endorsed as affecting quality of life. The distinct perspectives of diagnosed persons and care partners regarding disease impact differed notably for bvFTD/Pick's disease. Participating independently in a range of activities, within the home, outside the home, and with other people, were reported as challenging for people living with FTD, underscoring the degree to which the lives of these individuals are affected even at the mild and moderate stages of disease. Overall, by heeding the perspectives of those living with FTD, we can begin to design more meaningful research studies, provide better care, and develop therapies that improve quality of life.

额颞叶变性(FTD)是一个总括性术语,包括一系列罕见的神经退行性疾病,这些疾病会导致认知、行为和人格的进行性衰退。直接听取 FTD 患者及其护理伙伴的意见对于优化护理、确定有意义的临床试验终点以及改善研究招募和保留至关重要。本文介绍了 "FTD洞察力调查 "的部分数据,记录了轻度至中度FTD患者的诊断过程、症状以及FTD对痛苦、生活质量和独立性的影响。调查对象包括 219 名被诊断患有 FTD 的患者和 437 名目前的护理伙伴,他们代表了各种 FTD 诊断。约有一半的调查对象称,在确诊 FTD 之前,他们曾看过三位或三位以上的医生,并注意到他们之前曾有过各种诊断。最常被认可的症状往往与特定诊断的临床特征相一致,但诊断类别内报告的症状存在很大差异,诊断类别之间的症状也有相当大的重叠。FTD 的认知和语言症状通常最令被诊断者感到痛苦,丧失独立性也被认为是影响生活质量的因素。对于bvFTD/皮克病,被诊断者和护理伙伴对疾病影响的不同看法有显著差异。据报告,对于 FTD 患者来说,独立参与家庭内外的一系列活动以及与他人一起活动都是一项挑战,这凸显出即使在轻度和中度疾病阶段,这些患者的生活也会受到很大程度的影响。总之,通过听取 FTD 患者的观点,我们可以开始设计更有意义的研究,提供更好的护理,并开发出能改善生活质量的疗法。
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引用次数: 0
The Validity of Health-Related Quality of Life Instruments in Patients With Late-Stage Parkinson's Disease. 与健康相关的生活质量仪器在晚期帕金森病患者中的有效性
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2023-05-01 DOI: 10.1177/08919887221119963
Mouhammed Ramadhan, Anette Schrag

Objective: To examine the validity of health-related quality of life (Hr-QoL) measures in patients with late-stage Parkinson's disease (PD).

Methods: We analysed data from patients with late-stage PD and their carers who were assessed with a range of clinical measures and the EQ-5D-3 L. The DEMQOL-Proxy was completed for 157 patients with a diagnosis of dementia and the PDQ-8 by 401 patients without dementia. Convergent validity was assessed using correlations with measures of Parkinson's severity, independence and cognitive function, and construct validity using correlations with patients' own EQ-5D-3 L scores. In addition, we assessed divergent validity using correlations with carers' own EQ-5D index, EQ-VAS and Zarit caregiver burden scores.

Results: In patients without dementia, both the PDQ-8 and EQ-5D-3 L correlated with measures of disease severity, dependence and carer burden scores, and PDQ-8 scores moderately with EQ-5D-3 L and EQ-5D-3 L VAS scores. In patients with dementia, EQ-5D-3 L scores correlated with disease severity, cognition and dependence scores, but DEMQOL-Proxy scores were moderately associated only with patients' dependence and carers' own EQ-5D-3 L scores but not patients' disease severity, EQ-5D-3 L or cognitive scores.

Conclusions: The PDQ-8 and EQ-5D-3 L have adequate validity in late stage PD without dementia, but in those with PD and dementia the EQ-5D-3 L may be preferable to the DEMQOL-Proxy.

目的:探讨与健康相关的生活质量(Hr-QoL)指标在晚期帕金森病(PD)患者中的有效性。方法:我们分析了来自晚期PD患者及其护理人员的数据,这些患者通过一系列临床测量和eq - 5d - 3l进行了评估。157名诊断为痴呆的患者完成了DEMQOL-Proxy, 401名无痴呆的患者完成了PDQ-8。通过与帕金森病严重程度、独立性和认知功能的相关性来评估收敛效度,并通过与患者自身eq - 5d - 3l评分的相关性来评估构建效度。此外,我们使用与照顾者自己的EQ-5D指数、EQ-VAS和Zarit照顾者负担评分的相关性来评估分歧效度。结果:在无痴呆患者中,PDQ-8和eq - 5d - 3l与疾病严重程度、依赖性和照顾者负担评分相关,PDQ-8评分与eq - 5d - 3l和eq - 5d - 3l VAS评分有中度相关性。在痴呆患者中,eq - 5d - 3l评分与疾病严重程度、认知和依赖评分相关,但DEMQOL-Proxy评分仅与患者的依赖和护理者自己的eq - 5d - 3l评分中度相关,而与患者的疾病严重程度、eq - 5d - 3l或认知评分无关。结论:PDQ-8和eq - 5d - 3l在无痴呆的晚期PD患者中具有足够的有效性,但在有PD和痴呆的患者中eq - 5d - 3l可能优于DEMQOL-Proxy。
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引用次数: 0
期刊
Journal of Geriatric Psychiatry and Neurology
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