早期阿尔茨海默病患者的诊断认知：西班牙的一项观察性研究。
Awareness of Diagnosis in Persons with Early-Stage Alzheimer's Disease: An Observational Study in Spain.
作者信息
Villarejo-Galende Alberto, García-Arcelay Elena, Piñol-Ripoll Gerard, Del Olmo-Rodríguez Antonio, Viñuela Félix, Boada Mercè, Franco-Macías Emilio, de la Peña Almudena Ibañez, Riverol Mario, Puig-Pijoan Albert, Abizanda-Soler Pedro, Arroyo Rafael, Baquero-Toledo Miquel, Feria-Vilar Inmaculada, Balasa Mircea, Berbel Ángel, Rodríguez-Rodríguez Eloy, Vieira-Campos Alba, García-Ribas Guillermo, Rodrigo-Herrero Silvia, Lleó Albert, Maurino Jorge
机构信息
Department of Neurology, Hospital Universitario 12 de Octubre, Instituto de Investigación Hospital 12 de Octubre (I+12), CIBERNED, Madrid, Spain.
Medical Department, Roche Farma, Ribera del Loira 50, 28042, Madrid, Spain.
出版信息
Neurol Ther. 2022 Sep;11(3):1183-1192. doi: 10.1007/s40120-022-00367-3. Epub 2022 Jun 1.
INTRODUCTION
Limited information is available on people's experiences of living with Alzheimer's disease (AD) at earlier stages. This study assessed awareness of diagnosis among people with early-stage AD and its impact on different person-centered outcome measures.
METHODS
We conducted an observational, cross-sectional study in 21 memory clinics in Spain. Persons aged 50-90 years, diagnosed with prodromal or mild AD (NIA/AA criteria), a Mini Mental State Examination (MMSE) score ≥ 22, and a Clinical Dementia Rating-Global score (CDR-GS) of 0.5 or 1.0 were recruited. The Representations and Adjustment to Dementia Index (RADIX) was used to assess participants' beliefs about their condition and its consequences.
RESULTS
A total of 149 persons with early-stage AD were studied. Mean (SD) age was 72.3 (7.0) years and 50.3% were female. Mean duration of AD was 1.4 (1.8) years. Mean MMSE score was 24.6 (2.1) and 87.2% had a CDR-GS score of 0.5. Most participants (n = 84, 57.5%) used a descriptive term related to specific AD symptoms (e.g., memory difficulties) when asked what they called their condition. Participants aware of their diagnosis using the term AD (n = 66, 45.2%) were younger, had more depressive symptoms, and poorer life satisfaction and quality of life compared to those without awareness of their specific diagnosis. Practical and emotional consequences RADIX scores showed a significant negative correlation with Quality of Life in Alzheimer's Disease score (rho = - 0.389 and - 0.413, respectively; p < 0.0001). Years of education was the only predictor of awareness of AD diagnosis [OR = 1.04 (95% CI 1.00-1.08); p = 0.029].
CONCLUSIONS
Awareness of diagnosis was a common phenomenon in persons with early-stage AD negatively impacting their quality of life. Understanding illness representations in earlier stages may facilitate implementing optimized care that supports improved quality of life and well-being.
引言
关于早期阿尔茨海默病（AD）患者的生活经历，目前可获取的信息有限。本研究评估了早期AD患者对诊断的知晓情况及其对不同以患者为中心的结局指标的影响。
方法
我们在西班牙的21家记忆诊所开展了一项观察性横断面研究。招募年龄在50 - 90岁之间、被诊断为前驱期或轻度AD（符合NIA/AA标准）、简易精神状态检查表（MMSE）得分≥22且临床痴呆评定量表 - 总体得分（CDR - GS）为0.5或1.0的患者。使用痴呆症认知与适应指数（RADIX）来评估参与者对自身状况及其后果的认知。
结果
共研究了149例早期AD患者。平均（标准差）年龄为72.3（7.0）岁，女性占50.3%。AD的平均病程为1.4（1.8）年。平均MMSE得分为24.6（2.1），87.2%的患者CDR - GS得分为0.5。当被问及如何称呼自己的病情时，大多数参与者（n = 84，57.5%）使用了与特定AD症状相关的描述性术语（如记忆困难）。与未意识到自己具体诊断的患者相比，意识到自己诊断为AD的参与者（n = 66，45.2%）更年轻，有更多抑郁症状，生活满意度和生活质量更低。RADIX量表的实际和情感后果得分与阿尔茨海默病生活质量得分呈显著负相关（rho分别为 - 0.389和 - 0.413；p < 0.0001）。受教育年限是AD诊断知晓情况的唯一预测因素[比值比（OR）= 1.04（95%置信区间1.00 - 1.08）；p = 0.029]。
结论
诊断知晓情况在早期AD患者中是一种常见现象，对他们的生活质量有负面影响。了解早期阶段的疾病认知情况可能有助于实施优化护理，以支持提高生活质量和幸福感。
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