The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of pati...The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of patients and their family caregivers for optimal clinical management of early-onset dementia from the perspective of health care professionals. A sample of 13 health care professionals from various disciplines, who worked with individuals who suffered from Alzheimer’s disease or related disorders and their family caregivers, took part in focus groups or semi-structured individual interviews, based on a life course perspective. Three recurrent themes emerged from the data collected from health care professionals and are related to: 1) identification with the difficult experiences of caregivers and powerlessness in view of the lack of services;2) gaps in the care and services offered, including the lack of clinical tools to ensure that patients under age 65 were diagnosed and received follow-up care, and 3) solutions for care and services that were tailored to the needs of the caregiver-patient dyads and health care professionals, the most important being that the residual abilities of younger patients be taken into account, that flexible forms of respite be offered to family caregivers and that training be provided to health care professionals. The results of this study provided some innovative guidelines for optimal clinical management of early-onset dementia in terms of the caregiver-patient dyad.展开更多
BACKGROUND Despite the frequent progression from Parkinson’s disease(PD)to Parkinson’s disease dementia(PDD),the basis to diagnose early-onset Parkinson dementia(EOPD)in the early stage is still insufficient.AIM To ...BACKGROUND Despite the frequent progression from Parkinson’s disease(PD)to Parkinson’s disease dementia(PDD),the basis to diagnose early-onset Parkinson dementia(EOPD)in the early stage is still insufficient.AIM To explore the prediction accuracy of sociodemographic factors,Parkinson's motor symptoms,Parkinson’s non-motor symptoms,and rapid eye movement sleep disorder for diagnosing EOPD using PD multicenter registry data.METHODS This study analyzed 342 Parkinson patients(66 EOPD patients and 276 PD patients with normal cognition),younger than 65 years.An EOPD prediction model was developed using a random forest algorithm and the accuracy of the developed model was compared with the naive Bayesian model and discriminant analysis.RESULTS The overall accuracy of the random forest was 89.5%,and was higher than that of discriminant analysis(78.3%)and that of the naive Bayesian model(85.8%).In the random forest model,the Korean Mini Mental State Examination(K-MMSE)score,Korean Montreal Cognitive Assessment(K-MoCA),sum of boxes in Clinical Dementia Rating(CDR),global score of CDR,motor score of Untitled Parkinson’s Disease Rating(UPDRS),and Korean Instrumental Activities of Daily Living(KIADL)score were confirmed as the major variables with high weight for EOPD prediction.Among them,the K-MMSE score was the most important factor in the final model.CONCLUSION It was found that Parkinson-related motor symptoms(e.g.,motor score of UPDRS)and instrumental daily performance(e.g.,K-IADL score)in addition to cognitive screening indicators(e.g.,K-MMSE score and K-MoCA score)were predictors with high accuracy in EOPD prediction.展开更多
目的系统评价年轻型痴呆症患者生活体验与内心需求,旨在为临床制订针对性的干预策略提供依据。方法检索PubMed、Embase、Web of Science、Cochrane Library、PsycINFO、中国知网、维普数据库、万方数据库、中国生物医学文献数据库中关...目的系统评价年轻型痴呆症患者生活体验与内心需求,旨在为临床制订针对性的干预策略提供依据。方法检索PubMed、Embase、Web of Science、Cochrane Library、PsycINFO、中国知网、维普数据库、万方数据库、中国生物医学文献数据库中关于年轻型痴呆症患者生活体验与内心需求的质性研究,检索时限为建库至2022年9月。由2名经过循证知识培训的研究者按照文献纳入与排除标准独立、严格对文献进行筛选和资料提取,采用汇集性整合方法对研究结果进行整合、分类。结果共纳入11篇文献,提取33个研究结果,归纳成8个类别,合成3个整合结果:年轻型痴呆症患者在日常生活、社交活动和工作中面临困难和挑战,心理负担和病耻感严重;不同情感体验患者在应对方式上存在差异,表现为逃避、面对和采取积极应对方式;患者存在医患沟通不畅、同伴支持欠缺、适龄服务缺乏等多维度未满足需求,渴望获得多种来源的支持。结论社区、医院和社会应充分联动,为年轻型痴呆症患者提供支持,减少患者耻辱感、改进诊断过程、鼓励患者积极应对。未来需要进行更多研究,以帮助医疗保健人员了解年轻型痴呆症患者的体验和需求,以期提高患者生命质量。展开更多
文摘The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of patients and their family caregivers for optimal clinical management of early-onset dementia from the perspective of health care professionals. A sample of 13 health care professionals from various disciplines, who worked with individuals who suffered from Alzheimer’s disease or related disorders and their family caregivers, took part in focus groups or semi-structured individual interviews, based on a life course perspective. Three recurrent themes emerged from the data collected from health care professionals and are related to: 1) identification with the difficult experiences of caregivers and powerlessness in view of the lack of services;2) gaps in the care and services offered, including the lack of clinical tools to ensure that patients under age 65 were diagnosed and received follow-up care, and 3) solutions for care and services that were tailored to the needs of the caregiver-patient dyads and health care professionals, the most important being that the residual abilities of younger patients be taken into account, that flexible forms of respite be offered to family caregivers and that training be provided to health care professionals. The results of this study provided some innovative guidelines for optimal clinical management of early-onset dementia in terms of the caregiver-patient dyad.
基金Supported by Basic Science Research Program through the National Research Foundation of Korea funded by the Ministry of Education,No.NRF-2018R1D1A1B07041091 and NRF-2019S1A5A8034211.
文摘BACKGROUND Despite the frequent progression from Parkinson’s disease(PD)to Parkinson’s disease dementia(PDD),the basis to diagnose early-onset Parkinson dementia(EOPD)in the early stage is still insufficient.AIM To explore the prediction accuracy of sociodemographic factors,Parkinson's motor symptoms,Parkinson’s non-motor symptoms,and rapid eye movement sleep disorder for diagnosing EOPD using PD multicenter registry data.METHODS This study analyzed 342 Parkinson patients(66 EOPD patients and 276 PD patients with normal cognition),younger than 65 years.An EOPD prediction model was developed using a random forest algorithm and the accuracy of the developed model was compared with the naive Bayesian model and discriminant analysis.RESULTS The overall accuracy of the random forest was 89.5%,and was higher than that of discriminant analysis(78.3%)and that of the naive Bayesian model(85.8%).In the random forest model,the Korean Mini Mental State Examination(K-MMSE)score,Korean Montreal Cognitive Assessment(K-MoCA),sum of boxes in Clinical Dementia Rating(CDR),global score of CDR,motor score of Untitled Parkinson’s Disease Rating(UPDRS),and Korean Instrumental Activities of Daily Living(KIADL)score were confirmed as the major variables with high weight for EOPD prediction.Among them,the K-MMSE score was the most important factor in the final model.CONCLUSION It was found that Parkinson-related motor symptoms(e.g.,motor score of UPDRS)and instrumental daily performance(e.g.,K-IADL score)in addition to cognitive screening indicators(e.g.,K-MMSE score and K-MoCA score)were predictors with high accuracy in EOPD prediction.
文摘目的系统评价年轻型痴呆症患者生活体验与内心需求,旨在为临床制订针对性的干预策略提供依据。方法检索PubMed、Embase、Web of Science、Cochrane Library、PsycINFO、中国知网、维普数据库、万方数据库、中国生物医学文献数据库中关于年轻型痴呆症患者生活体验与内心需求的质性研究,检索时限为建库至2022年9月。由2名经过循证知识培训的研究者按照文献纳入与排除标准独立、严格对文献进行筛选和资料提取,采用汇集性整合方法对研究结果进行整合、分类。结果共纳入11篇文献,提取33个研究结果,归纳成8个类别,合成3个整合结果:年轻型痴呆症患者在日常生活、社交活动和工作中面临困难和挑战,心理负担和病耻感严重;不同情感体验患者在应对方式上存在差异,表现为逃避、面对和采取积极应对方式;患者存在医患沟通不畅、同伴支持欠缺、适龄服务缺乏等多维度未满足需求,渴望获得多种来源的支持。结论社区、医院和社会应充分联动,为年轻型痴呆症患者提供支持,减少患者耻辱感、改进诊断过程、鼓励患者积极应对。未来需要进行更多研究,以帮助医疗保健人员了解年轻型痴呆症患者的体验和需求,以期提高患者生命质量。
