memory clinic

记忆诊所
  • 文章类型: Journal Article
    背景:与痴呆症相关的损伤会导致复杂的障碍,使用,并采用数字健康技术(DHT)。这些障碍可能导致数字健康不平等。因此,已经开发了基于文献的设计原则,称为DEMIGNED,以支持针对这种快速增长的人口的DHT的设计和评估。
    目的:本研究旨在将DEMIGNED原则应用于可用性评估方法,以(1)在移动网站上捕获可用性问题,为访问记忆诊所的人们提供信息资源,包括那些患有主观认知能力下降(SCD)的人,轻度认知障碍(MCI),或者痴呆症,(2)调查专家测试中删除原则捕获的可用性问题的真实性,特别适用于作为提供DHT手段的移动网站。
    方法:首先,进行了启发式评估,DEMIGNED原则作为特定领域的指导方针,拥有3名双重专家(在可用性和痴呆症方面都有经验)和2名可用性工程专家。第二,对患有SCD的患者进行了大声思考,MCI或痴呆症。
    结果:启发式评估导致了36个独特的可用性问题。参观记忆诊所的7人的代表性样本参加了一次大声思考会议,包括4例(57%)患有SCD,1例(14%)患有MCI,2例(29%)患有痴呆症。对大声思考会话的分析表明,有181次遇到可用性问题。在这些相遇中,144(79.6%)可以映射到启发式评估中确定的18个可用性问题。用户测试中剩下的37次(20.4%)暴露了另外10个独特的可用性问题。在大声思考会话中经常描述的可用性问题包括使用搜索功能的困难,用户的期望和内容组织之间的差异,需要滚动,信息过载,和不明确的系统反馈。
    结论:通过在专家测试中应用DEMIGNED原则,评估人员能够捕获79.6%(144/181)的所有可用性问题遇到在移动网站的用户测试访问记忆诊所的人,包括痴呆症患者。关于独特的可用性问题,在启发式评估过程中发现的50%(18/36)的独特可用性问题是由用户测试会话捕获的。未来的研究应该研究DEMIGNED原则对其他数字健康功能的适用性,以增加数字健康的可及性,并减少这个复杂和快速增长的人口的数字健康不平等。
    BACKGROUND: Dementia-related impairments can cause complex barriers to access, use, and adopt digital health technologies (DHTs). These barriers can contribute to digital health inequities. Therefore, literature-based design principles called DEMIGNED have been developed to support the design and evaluation of DHTs for this rapidly increasing population.
    OBJECTIVE: This study aims to apply the DEMIGNED principles in usability evaluation methods to (1) capture usability problems on a mobile website providing information resources for people visiting a memory clinic, including those living with subjective cognitive decline (SCD), mild cognitive impairment (MCI), or dementia, and (2) investigate the realness of usability problems captured by the DEMIGNED principles in expert testing, specifically for mobile websites that act as a means of providing DHTs.
    METHODS: First, a heuristic evaluation was conducted, with the DEMIGNED principles serving as domain-specific guidelines, with 3 double experts (experienced in both usability and dementia) and 2 usability engineering experts. Second, think-aloud sessions were conducted with patients visiting a memory clinic who were living with SCD, MCI, or dementia.
    RESULTS: The heuristic evaluation resulted in 36 unique usability problems. A representative sample of 7 people visiting a memory clinic participated in a think-aloud session, including 4 (57%) with SCD, 1 (14%) with MCI, and 2 (29%) with dementia. The analysis of the think-aloud sessions revealed 181 encounters with usability problems. Of these encounters, 144 (79.6%) could be mapped to 18 usability problems identified in the heuristic evaluation. The remaining 37 (20.4%) encounters from the user testing revealed another 10 unique usability problems. Usability problems frequently described in the think-aloud sessions encompassed difficulties with using the search function, discrepancies between the user\'s expectations and the content organization, the need for scrolling, information overload, and unclear system feedback.
    CONCLUSIONS: By applying the DEMIGNED principles in expert testing, evaluators were able to capture 79.6% (144/181) of all usability problem encounters in the user testing of a mobile website for people visiting a memory clinic, including people living with dementia. Regarding unique usability problems, 50% (18/36) of the unique usability problems identified during the heuristic evaluation were captured by the user-testing sessions. Future research should look into the applicability of the DEMIGNED principles to other digital health functionalities to increase the accessibility of digital health and decrease digital health inequity for this complex and rapidly increasing population.
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  • 文章类型: Journal Article
    目标:作为一项更大研究的一部分,并与农村初级卫生保健团队合作,农村痴呆症行动研究(RaDAR)初级保健记忆诊所已经发展并继续在萨斯喀彻温省东南部的社区中传播,加拿大。这项研究的重点是首先开发和实施RADAR记忆诊所的四个社区的地理区域,并描述了老年人可获得的服务和支持,包括记忆诊所患者和居住在这些地区的家庭。我们的目标是识别和描述现有的计划和差距,创建库存和地图,并探索这些农村地区痴呆症患者家庭照顾者的服务体验。
    方法:使用定性的描述性设计,从2020年12月到2021年4月,使用焦点小组(n=4)和医疗保健提供者/管理者(n=12)对服务进行了环境扫描,次要来源(例如,计划手册)审查,以及通过社区网站针对四个Radar记忆诊所社区和周边地区的系统互联网搜索,在线资源,和211萨斯喀彻温省服务数据库。使用内容分析对数据进行分析;研究结果为2022年3月至7月对护理人员进行的半结构化访谈(n=5)提供了信息,并进行了主题分析。本研究中探索的地理区域面积约为5666km2。
    结果:从扫描,确定了43个服务,分为7种服务类型,并按位置绘制。17项服务与痴呆症有关。服务包括社交/休闲活动(n=14),一般支持/推荐(n=13),交通运输(n=7),信息/教育(n=4),喘息时间(n=2),家庭护理(n=2),和安全性(n=1)。服务级别包括本地(n=24),省(n=17),和国家(n=2),并亲自提供,远程(或两者),在远程提供的4种服务类型中提供20种服务。总的来说,大多数服务没有收费,涉及自我推荐,和提供者有一系列的教育/培训。关键的采访主题反映了当地可用的需求,提供(I)个性化的无障碍服务,灵活,基于需求的方法,(ii)家庭护理和护理的连续性,以及(iii)正式和非正式支持。确定了关键差距,包括(i)本地可访问的,一般可用的服务和资源,(二)对服务提供者进行与痴呆症有关的培训和教育,和(iii)对现有服务的认识。服务的好处,差距的后果,并报告了弥补差距的建议。总的来说,服务提供者和项目参与者是女性和男性的平均混合体,节目内容性别中立。
    结论:调查结果强调了一系列可用的服务,以及许多不同的服务用户体验和观点,在这些农村地区。确定了关键的服务差距,和护理人员提出了一些具体建议来解决这些差距。研究结果强调了为农村和偏远痴呆症患者及其家人提供服务和参与计划的多种机会。
    OBJECTIVE: As part of a larger study, and in collaboration with rural primary health care teams, RaDAR (Rural Dementia Action Research) primary care memory clinics have evolved and continue to spread in communities across southeast Saskatchewan, Canada. This study focuses on the geographical areas of the four communities where RaDAR memory clinics were first developed and implemented and describes the services and supports available to older adults including memory clinic patients and families living in these areas. Our goal was to identify and describe existing programs and gaps, create inventories and maps, and explore the service experiences of family caregivers of people living with dementia in these rural areas.
    METHODS: Using a qualitative descriptive design, an environmental scan of services was conducted from December 2020 to April 2021 using focus groups (n = 4) with health care providers/managers (n = 12), a secondary source (e.g., program brochures) review, and a systematic internet search targeting four RaDAR memory clinic communities and surrounding areas via community websites, online resources, and the 211 Saskatchewan service database. Data were analyzed using content analysis; findings informed semi-structured interviews with caregivers (n = 5) conducted from March to July 2022, which were analyzed thematically. Geographic areas explored in this study covered an area of approximately 5666 km2.
    RESULTS: From the scan, 43 services were identified, categorized into 7 service types, and mapped by location. Seventeen services were dementia-related. Services included social/leisure activities (n = 14), general support/referrals (n = 13), transportation (n = 7), information/education (n = 4), respite (n = 2), in-home care (n = 2), and safety (n = 1). Service levels included local (n = 24), provincial (n = 17), and national (n = 2), and were offered in-person, remotely (or both) with 20 services across 4 service types offered remotely. In general, most services had no fees, involved self-referral, and providers had a range of education/training. Key interview themes reflected the need for locally available, accessible services that offer (i) individualized, flexible, needs-based approaches, (ii) in-home care and continuity of care, and (iii) both formal and informal supports. Key gaps were identified, including (i) locally accessible, available services and resources in general, (ii) dementia-related training and education for service providers, and (iii) awareness of available services. Benefits of services, consequences of gaps, and recommendations to address gaps were reported. In general, service providers and program participants were an even mix of females and males, and program content was gender neutral.
    CONCLUSIONS: Findings highlight a range of available services, and a number of varied service-user experiences and perspectives, in these rural areas. Key service gaps were identified, and caregivers made some specific recommendations to address these gaps. Findings underscore multiple opportunities to inform service delivery and program participation for rural and remote people living with dementia and their families.
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  • 文章类型: Journal Article
    持续到老年的注意力缺陷多动障碍(ADHD)的特征通常与轻度认知障碍(MCI)的症状相混淆,MCI患者中可能的ADHD的实际发生率未知。这项研究估计了MCI患者可能患有ADHD的比例,并调查了确定MCI患者可能患有ADHD的因素。
    我们招募了36名老年患者(11名男性,25名女性,平均年龄72.4±7.6岁),符合MCI标准。MCI患者分为[MCI/ADHD(+)]和无[MCI/ADHD(-)]可能的ADHD患者,根据温德犹他州评分量表。自闭症的特点,注意力不集中,以及童年和当前时期的多动特征,估计智商,和人口统计学数据进行了组间比较。对MCI/ADHD(+)患者进行多因素logistic回归分析。
    将9例(25.0%)和27例患者加入MCI/ADHD(+)和MCI/ADHD(-)组,分别。MCI/ADHD(+)组主要由男性组成,那些在年轻时参观诊所的人,接受了更多年的教育,有强烈的自闭症谱系障碍倾向。多因素logistic回归分析显示,男性和当前多动症是MCI患者可能的ADHD的重要预测因素。
    四分之一的MCI患者可能患有ADHD。MCI诊断时的男性和多动症可能有助于预测MCI患者可能的ADHD。然而,这些结果是从单中心获得的,小案例研究,应通过大量病例的纵向研究证实。
    UNASSIGNED: Characteristics of attention deficit hyperactivity disorder (ADHD) that persist into old age are often confused with symptoms of mild cognitive impairment (MCI), and the actual rate of probable ADHD in people with MCI is unknown. This study estimated the proportion of MCI patients with probable ADHD and investigated the factors to identify MCI patients with probable ADHD.
    UNASSIGNED: We recruited 36 elderly patients (11 males, 25 females, mean age 72.4 ± 7.6 years) who met the MCI criteria. The MCI patients were classified as those with [MCI/ADHD (+)] and without [MCI/ADHD (-)] probable ADHD, according to the Wender Utah Rating Scale scores. The autism features, inattention, and hyperactivity features during childhood and current periods, estimated intelligence quotient, and demographic data were compared between the groups. Multiple logistic regression analysis was performed to identify factors of MCI/ADHD (+) patients.
    UNASSIGNED: Nine (25.0%) and 27 patients were added into the MCI/ADHD (+) and MCI/ADHD (-) groups, respectively. The MCI/ADHD (+) group mostly comprised men, those who visited the clinic at a younger age, had more years of schooling, and had strong autism spectrum disorder tendencies. Multiple logistic regression analysis indicated male sex and current hyperactivity as significant predictors of probable ADHD in MCI patients.
    UNASSIGNED: A quarter of the patients with MCI had probable ADHD. Male sex and hyperactivity at the time of MCI diagnosis might help in predicting probable ADHD in MCI patients. However, these results were obtained from a single-center, small-case study and should be confirmed via longitudinal studies with a large number of cases.
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  • 文章类型: Journal Article
    背景:关于脑淀粉样血管病(CAA)的波士顿标准v2.0纳入了非出血性成像标志物。其在认知障碍患者中的患病率和意义仍不确定。
    方法:我们研究了622名记忆门诊患者,这些患者具有可用的磁共振成像(MRI)和脑脊液(CSF)生物标志物。两名评估者评估了非出血标志物,我们通过多变量分析探讨了它们与临床特征的关联.
    结果:大多数患者有轻度认知障碍;中位年龄为71岁,50%为女性。使用v2.0标准,可能或可能的CAA从75例增加到383例。68%的样本有非出血性CAA标记,与年龄独立相关(比值比[OR]=1.04,95%置信区间[CI]=1.01-1.07),女性(OR=1.68,95%CI=1.11-2.54),出血性CAA标志物(OR=2.11,95%CI=1.02-4.35)。
    结论:记忆诊所队列中三分之二的患者具有非出血性CAA标志物,增加符合v2.0CAA标准的患者数量。纵向方法应该探索这些标记的含义,尤其是这个人群的出血风险。
    结论:更新的波士顿脑淀粉样血管病(CAA)标准现在包括非出血性标志物。非出血性CAA标志物在记忆门诊患者中的患病率未知。我们的记忆诊所中有三分之二的患者表现出非出血性CAA标志物。这些标记的存在与年龄有关,女性性别,和出血性CAA标志物。出现这些类型标志物的患者的出血风险尚不清楚。
    The Boston criteria v2.0 for cerebral amyloid angiopathy (CAA) incorporated non-hemorrhagic imaging markers. Their prevalence and significance in patients with cognitive impairment remain uncertain.
    We studied 622 memory clinic patients with available magnetic resonance imaging (MRI) and cerebrospinal fluid (CSF) biomarkers. Two raters assessed non-hemorrhagic markers, and we explored their association with clinical characteristics through multivariate analyses.
    Most patients had mild cognitive impairment; median age was 71 years and 50% were female. Using the v2.0 criteria, possible or probable CAA increased from 75 to 383 patients. Sixty-eight percent of the sample had non-hemorrhagic CAA markers, which were independently associated with age (odds ratio [OR] = 1.04, 95% confidence interval [CI] = 1.01-1.07), female sex (OR = 1.68, 95% CI = 1.11-2.54), and hemorrhagic CAA markers (OR = 2.11, 95% CI = 1.02-4.35).
    Two-thirds of patients from a memory clinic cohort had non-hemorrhagic CAA markers, increasing the number of patients meeting the v2.0 CAA criteria. Longitudinal approaches should explore the implications of these markers, particularly the hemorrhagic risk in this population.
    The updated Boston criteria for cerebral amyloid angiopathy (CAA) now include non-hemorrhagic markers. The prevalence of non-hemorrhagic CAA markers in memory clinic patients is unknown. Two-thirds of patients in our memory clinic presented non-hemorrhagic CAA markers. The presence of these markers was associated with age, female sex, and hemorrhagic CAA markers. The hemorrhagic risk of patients presenting these type of markers remains unclear.
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  • 文章类型: Journal Article
    背景:认知储备可能减轻记忆门诊患者患阿尔茨海默病痴呆的风险。没有研究检查压力对这种关系的潜在修饰作用。
    方法:我们检查了认知储备指数的横截面关联(CRI;教育,职业复杂性,身体和休闲活动,和社会健康)与113名记忆门诊患者的认知表现和AD相关生物标志物。评估了3年随访期间CRI与认知之间的纵向关联。我们检查了关联是否受感知压力和昼夜唾液皮质醇的五项指标的影响。
    结果:较高的CRI评分与更好的认知相关。调整皮质醇措施降低了CRI对认知的有益关联。在皮质醇AM/PM比率较高(有利)的个体中,较高的CRI评分与较好的工作记忆相关,但不是在皮质醇AM/PM比率低的个体中。CRI和AD相关生物标志物之间没有发现相关性。
    结论:生理应激降低了记忆门诊患者认知储备的神经认知益处。
    结论:生理应激可能会降低记忆门诊患者的认知刺激和丰富生活体验(认知储备[CR])带来的神经认知益处。皮质醇觉醒反应改变了CR与P-tau181之间的关系,P-tau181是阿尔茨海默病(AD)的标志物。有效的压力管理技术用于AD和相关的痴呆预防是必要的。
    Cognitive reserve might mitigate the risk of Alzheimer\'s dementia among memory clinic patients. No study has examined the potential modifying role of stress on this relation.
    We examined cross-sectional associations of the cognitive reserve index (CRI; education, occupational complexity, physical and leisure activities, and social health) with cognitive performance and AD-related biomarkers among 113 memory clinic patients. The longitudinal association between CRI and cognition over a 3-year follow-up was assessed. We examined whether associations were influenced by perceived stress and five measures of diurnal salivary cortisol.
    Higher CRI scores were associated with better cognition. Adjusting for cortisol measures reduced the beneficial association of CRI on cognition. A higher CRI score was associated with better working memory in individuals with higher (favorable) cortisol AM/PM ratio, but not among individuals with low cortisol AM/PM ratio. No association was found between CRI and AD-related biomarkers.
    Physiological stress reduces the neurocognitive benefits of cognitive reserve among memory clinic patients.
    Physiological stress may reduce the neurocognitive benefits accrued from cognitively stimulating and enriching life experiences (cognitive reserve [CR]) in memory clinic patients. Cortisol awakening response modified the relation between CR and P-tau181, a marker of Alzheimer\'s disease (AD). Effective stress management techniques for AD and related dementia prevention are warranted.
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  • 文章类型: Journal Article
    背景:初级卫生保健在痴呆检测中具有核心作用,诊断,和管理,特别是在资源匮乏的农村地区。护理导航是一种改善整合和获得护理的策略,但是,对于导航员如何与农村初级保健团队合作以支持痴呆症护理知之甚少。在萨斯喀彻温省,加拿大,农村痴呆症行动研究(RaDAR)团队与农村初级卫生保健团队合作,实施了跨专业记忆诊所,其中包括一名阿尔兹海默症协会第一环节协调员(FLC),担任领航员.研究目标是检查FLC和临床团队成员对FLC参与的影响的观点,并分析阿尔茨海默病协会的数据,比较与三种类型的导航者-客户接触相关的结果。
    方法:本研究采用混合方法设计。对五个诊所的FLC(n=3)和诊所团队成员(n=6)进行了个人半结构化访谈。使用主题归纳分析对数据进行分析。对以前收集的阿尔茨海默病协会第一链接数据库记录进行了纵向回顾性分析。将记忆诊所的客户与诊所地理区域中的自我和直接转诊的客户进行了比较,以便及时进行首次联系,持续时间,和联系人的数量。
    结果:在FLC和团队访谈中确定了三个关键主题:FLC参与对患者和家属的感知益处,对记忆诊所团队成员的好处,以及农村地理位置的影响。而其他团队成员评估了病人,只有FLC专注于护理人员,提供情感和心理支持,连接到服务,和症状管理。面对面接触有助于FLC与护理人员建立关系,促进未来的接触。团队成员松了一口气,因为他们知道护理人员的需求得到了解决,并了解了痴呆症亚型和他们可以推荐给痴呆症非诊所客户的可用服务。尽管农村地区的挑战包括冬季可用服务减少和旅行挑战,FLC的作用更加重要,因为它可能是唯一可用的支持。
    结论:FLC和团队成员确定了嵌入式FLC对患者的感知益处,看护者,和他们自己,其中许多与FLC本人有关。
    BACKGROUND: Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts.
    METHODS: This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts.
    RESULTS: Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available.
    CONCLUSIONS: FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.
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  • 文章类型: Journal Article
    背景:当前的研究检查了综合神经心理学评估和选定的内侧颞区的体积评估对结构磁共振成像(MRI)的贡献,以识别记忆临床队列中遗忘型轻度认知障碍(aMCI)和轻度可能的阿尔茨海默病(AD)痴呆的患者。
    方法:全面的神经心理学评估和自动内嗅,跨昆虫,在40名健康对照中进行了海马体积测量,38例患者有主观记忆症状,16例aMCI患者,16例轻度可能的AD痴呆患者。多项逻辑回归用于比较神经心理学和MRI测量。
    结果:神经心理学和MRI措施的结合改善了单独的MRI措施的组成员预测,但没有改善单独的神经心理学措施的组成员预测。
    结论:综合神经心理学评估是评估认知障碍的重要工具。超过通过神经心理学评估做出的决定,内侧颞叶容积MRI测量没有贡献诊断价值。
    BACKGROUND: The current study examined the contributions of comprehensive neuropsychological assessment and volumetric assessment of selected mesial temporal subregions on structural magnetic resonance imaging (MRI) to identify patients with amnestic mild cognitive impairment (aMCI) and mild probable Alzheimer\'s disease (AD) dementia in a memory clinic cohort.
    METHODS: Comprehensive neuropsychological assessment and automated entorhinal, transentorhinal, and hippocampal volume measurements were conducted in 40 healthy controls, 38 patients with subjective memory symptoms, 16 patients with aMCI, 16 patients with mild probable AD dementia. Multinomial logistic regression was used to compare the neuropsychological and MRI measures.
    RESULTS: Combining the neuropsychological and MRI measures improved group membership prediction over the MRI measures alone but did not improve group membership prediction over the neuropsychological measures alone.
    CONCLUSIONS: Comprehensive neuropsychological assessment was an important tool to evaluate cognitive impairment. The mesial temporal volumetric MRI measures contributed no diagnostic value over and above the determinations made through neuropsychological assessment.
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  • 文章类型: Multicenter Study
    背景:记忆临床专业人员和患者都看到了数字工具的价值,然而,这些几乎没有找到他们的方式到临床实践。我们探索了数字工具的可用性,以支持日常记忆临床实践中的诊断工作。我们评估了整合多模态患者数据的四个模块(1.认知测验;cCOG,和2。MRI定量;cMRI)为临床医生提供有用的诊断信息(3。cDSI)以及患者可理解和个性化的信息(4。患者报告)。
    方法:我们在荷兰的五个记忆诊所进行了一项混合方法研究。14名临床医生(11名老年病专家/住院医师,两位神经科医生,邀请一名执业护士)将该工具整合到43名新的记忆门诊患者的常规护理中。我们通过问卷调查的定量数据评估了可用性和用户体验(患者,护理伙伴,临床医生),丰富了来自访谈(临床医生)的主题分析定性数据。
    结果:我们观察到临床医生使用工具的差异很大。我们的核心发现是临床医生:1)对患者报告主要是积极的,因为它有助于以患者为中心和个性化的沟通。这得到了患者和护理伙伴的认可,他指出病人报告是有用的和可以理解的,并帮助他们更好地理解他们的诊断,2)认为除了自己的临床能力之外,该工具还可以接受,3)表明该工具的有用性取决于患者人群和诊断过程的目的,4)解决的促进者(易用性,实践使完美)和障碍(高工作量,缺乏经验,数据不可用)。
    结论:这项多中心可用性研究表明,愿意采用数字工具来支持记忆诊所的诊断过程。临床医生,病人,和护理合作伙伴赞赏个性化的诊断报告。需要更多地关注临床医生的教育和培训,以利用该工具的全部功能并促进实际日常实践的实施。这些发现为在记忆临床实践中持久采用数字工具提供了重要的一步。
    Both memory clinic professionals and patients see value in digital tools, yet these hardly find their way to clinical practice. We explored the usability of a digital tool to support the diagnostic work-up in daily memory clinic practice. We evaluated four modules that integrate multi-modal patient data (1.cognitive test; cCOG, and 2. MRI quantification; cMRI) into useful diagnostic information for clinicians (3. cDSI) and understandable and personalized information for patients (4. patient report).
    We conducted a mixed-methods study in five Dutch memory clinics. Fourteen clinicians (11 geriatric specialists/residents, two neurologists, one nurse practitioner) were invited to integrate the tool into routine care with 43 new memory clinic patients. We evaluated usability and user experiences through quantitative data from questionnaires (patients, care partners, clinicians), enriched with thematically analyzed qualitative data from interviews (clinicians).
    We observed wide variation in tool use among clinicians. Our core findings were that clinicians: 1) were mainly positive about the patient report, since it contributes to patient-centered and personalized communication. This was endorsed by patients and care partners, who indicated that the patient report was useful and understandable and helped them to better understand their diagnosis, 2) considered the tool acceptable in addition to their own clinical competence, 3) indicated that the usefulness of the tool depended on the patient population and purpose of the diagnostic process, 4) addressed facilitators (ease of use, practice makes perfect) and barriers (high workload, lack of experience, data unavailability).
    This multicenter usability study revealed a willingness to adopt a digital tool to support the diagnostic process in memory clinics. Clinicians, patients, and care partners appreciated the personalized diagnostic report. More attention to education and training of clinicians is needed to utilize the full functionality of the tool and foster implementation in actual daily practice. These findings provide an important step towards a lasting adoption of digital tools in memory clinic practice.
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  • 文章类型: Journal Article
    背景:由于向早期诊断痴呆和/或阿尔茨海默病(AD)的转变,在记忆诊所中发现越来越多的人患有主观认知功能下降(SCD)和轻度认知功能障碍(MCI).然而,有证据表明,在根据个体患者的需求定制诊断工作时,还有改进的空间。为了优化护理质量,我们在专门的记忆诊所探讨了患者对诊断检查的看法.
    方法:本访谈研究在瑞典卡罗林斯卡大学医院进行。在索尔纳的记忆诊所对痴呆症的全面诊断工作在1周内进行。15名患者(8名女性;平均年龄=61岁[范围50-72];11名SCD,1个MCI和3个AD痴呆症)被有目的地选择进行一系列的三次半结构化访谈,专注于(1)需求和期望(在诊断测试的一周内),(2)经验(测试结果披露后2周内)和(3)反思和评估(披露后3个月)。使用主题内容分析(使用MaxQDA软件)分析转录的音频记录数据。
    结果:确定了三个关键主题:(1)个人访问记忆诊所的期望和动机强烈影响了他们的经历;(2)诊断检查影响了个人的社会心理;(3)诊断检查提供了一个机会来激励个人采用更健康的生活方式。
    结论:我们的发现强调了询问转诊到专门的记忆诊所的个体的期望和需求的重要性,允许对所提供的信息/建议进行期望管理和个性化,并可能告知需要全面诊断检查的患者的选择。可能需要结构指导来支持那些患有SCD和MCI的人,以帮助他们应对不确定性,有可能解决他们的问题,和/或刺激大脑健康。
    我们通过半结构化访谈收集了在三个不同时间点被转诊到记忆诊所的15个人的观点,这些访谈是主要的数据来源。
    BACKGROUND: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer\'s disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work-up to the needs of individual patients. To optimize the quality of care, we explored patients\' perspectives regarding the diagnostic work-up at a specialized memory clinic.
    METHODS: This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work-up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50-72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test-result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio-recorded data were analyzed using thematic content analysis (using MaxQDA software).
    RESULTS: Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work-up impacted individuals psychosocially and (3) the diagnostic work-up provided an opportunity to motivate individuals to adopt a healthier lifestyle.
    CONCLUSIONS: Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work-up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health.
    UNASSIGNED: We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source.
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  • 文章类型: Journal Article
    背景。青年型痴呆的诊断对患者及其家庭都提出了重大挑战,这通常不同于迟发性痴呆所面临的挑战。服务使用者和照顾者经验的证据往往显示对所接受护理的负面评价,以诊断时间较长为例,临床医生知识不足,缺乏适合年龄的护理。然而,研究员工支持年轻痴呆症患者的经验的证据相对较少。这项研究的目的是探索健康和社会护理人员的经验和反思,他们支持老年人精神卫生服务中的年轻痴呆症患者。以及他们对所工作系统的了解是否可以揭示出年轻痴呆症护理的障碍或促进因素的存在。方法。在2021年9月至12月之间,与英格兰年轻痴呆症患者和护理人员一起工作的健康和社会护理专业人员接受了远程采访。采用归纳专题分析法对数据进行分析。调查结果。采访了16名工作人员。构建了三个主题,其中六个子主题。第一个主题涉及对年轻发病的痴呆症支持的更大复杂性的看法。第二个主题描述了员工对有效支持年轻痴呆症患者的能力的恐惧,包括认为年轻的痴呆症需要专家的投入。最后一个主题描述了系统和结构上的低效率,这给工作人员带来了额外的挑战。Conclusions.为年轻痴呆症患者及其家人提供有效的支持需要在临床医生角色和心理健康服务方面进行调整。工作人员认为对年轻痴呆症的支持是一种专业干预措施,并认为他们所服务的服务适合于一般的心理健康和痴呆症的提供。讨论了研究结果,并提出了有关开发针对年轻发作性痴呆症的标准化痴呆症护理模型的建议,该模型可识别并响应年轻发作性痴呆症的独特经历。
    Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods. Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings. Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions. Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.
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