Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.
Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.
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DOI：
10.1177/08919887221135552
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发表时间：
2023-07
影响因子：
2.6
通讯作者：
中科院分区：
文献类型：
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作者：
疑似阿尔茨海默病和相关痴呆症 (ADRD) 患者及其家人在寻求诊断时会经历一个繁重的过程。这些挑战在最常见的痴呆综合症中是有问题的，但在罕见的非典型综合症中可能会更加令人痛苦，例如快速进展性痴呆（RPD），这种症状在发病后数月内可能致命。这项研究从死于典型 RPD、散发性克雅氏病 (sCJD) 的患者的护理人员的角度对诊断旅程经历进行了检查。 e 在这项混合方法研究中，定性数据来自对 12 名死于 SCJD 的人的前护理人员的访谈。图表审查数据取自有关 sCJD 患者的研究和临床图表数据。多学科研究团队使用定性和描述性统计分析对数据进行分析。我们确定了表征 sCJD 诊断旅程经历的 4 个总体主题：临床医生知识、临床医生沟通、不确定性经历以及作为倡导者的护理人员。我们还确定了诊断过程的 4 个阶段：识别、诊断检查、诊断和诊断后。每个阶段的子主题包括努力识别问题所在、复杂的测试和转诊过程、诊断的延迟和披露以及诊断后资源的获取。研究结果表明，需要做更多的工作来提高临床医生的诊断知识和沟通实践。此外，护理人员在诊断过程中需要更好的支持。我们从研究 sCJD 和其他 RPD 中学到的知识可能适用于其他更常见的痴呆症。
People with suspected Alzheimer’s disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD). eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis. We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis. Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.
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DOI：
10.1212/con.0000000000000251
发表时间：
2015-12
期刊：
Continuum (Minneapolis, Minn.)
影响因子：
--
作者：
Geschwind MD
通讯作者：
Geschwind MD
影响因子：
2.1
作者：
Bradford A;Kunik ME;Schulz P;Williams SP;Singh H
通讯作者：
Singh H
影响因子：
7
作者：
Uflacker, Alice;Edmondson, Mary C.;Appleby, Brian S.
通讯作者：
Appleby, Brian S.
影响因子：
3.7
作者：
Vandeborne, Liese;van Overbeeke, Eline;Huys, Isabelle
通讯作者：
Huys, Isabelle
影响因子：
14
作者：
通讯作者：
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