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2019 - 2021年阿联酋帕金森病在阿联酋人和外籍人口中的前两年观察性探索性真实生活临床表型及社会影响研究:EmPark研究

First Two-Year Observational Exploratory Real Life Clinical Phenotyping, and Societal Impact Study of Parkinson's Disease in Emiratis and Expatriate Population of United Arab Emirates 2019-2021: The EmPark Study.

作者信息

Metta Vinod, Ibrahim Huzaifa, Loney Tom, Benamer Hani T S, Alhawai Ali, Almuhairi Dananir, Al Shamsi Abdulla, Mohan Sneha, Rodriguez Kislyn, Mohan Judith, O'Sullivan Margaret, Muralidharan Neha, Al Mazrooei Sheikha, Dar Mousa Khadeeja, Chung-Faye Guy, Mrudula Rukmini, Falup-Pecurariu Cristian, Rodriguez Bilazquez Carmen, Matar Maryam, Borgohain Rupam, Chaudhuri K Ray

机构信息

Psychology & Neuroscience, Department of Neurosciences, Institute of Psychiatry, King's College London, London, UK.

Parkinson's Foundation Centre of Excellence, King's College Hospital, London, UK.

出版信息

J Pers Med. 2022 Aug 9;12(8):1300. doi: 10.3390/jpm12081300.

Abstract

BACKGROUND

Phenotypic differences in Parkinson's Disease (PD) among locals (Emiratis) and Expatriates (Expats) living in United Arab Emirates have not been described and could be important to unravel local aspects of clinical heterogenicity of PD pointing towards genetic and epigenetic variations.

OBJECTIVE

To investigate the range and nature of motor and nonmotor clinical presentations of PD and its impact on time to diagnosis, local service provisions, and quality of life in Emiratis and Expats in UAE, as well as address the presence of current unmet needs on relation to care and etiopathogenesis of PD related to possible genetic and epigenetic factors.

METHODS

a cross-sectional one point in time prospective, observational real-life study of 171 patients recruited from PD and Neurology clinics across United Arab Emirates from 2019-2021. Primary outcomes were sociodemographic data, motor and nonmotor symptoms (NMS), including cognition and sleep, and quality of life (QOL) assessments, Results: A total of 171 PD patients (52 Emiratis 119 Expats) were included with mean age (Emiratis 48.5 (13.1) Expats 64.15 (13.1)) and mean disease duration (Emiratis 4.8 (3.2) Expats 6.1 (2.9)). In the Emiratis, there was a significant mean delay in initiating treatment after diagnosis (Emiratis 1.2 (0.9) Expats 1.6 (1.1)), while from a clinical phenotyping aspect, there is a high percentage of akinesia 25 (48.1) or tremor dominant (22 (42.3)) phenotypes as opposed to mixed subtype 67 (56.3) in Expat cohorts; double tremor dominant, especially Emirati females (25%), had a predominant lower limb onset PD. Both Emirati (27.9 (24.0)) and Expat 29.4 (15.6) showed moderate NMS burden and the NMS profile is dominated by Sleep, Fatigue, Mood, Emotional well-being 3.0 (1.1) and Social Stigma 3.5 (0.9) aspects of PDQ8 SI measurements are predicted worse QOL in Emiratis, while lack of social support 2.3 (1.3) impaired QOL in Expat population. Awareness for advanced therapies was low and only 25% of Emiratis were aware of deep brain surgery (DBS), compared to 69% Expats. Only 2% of Emiratis, compared to 32% of Expats, heard of Apomorphine infusion (CSAI), and no (0%) Emiratis were aware of intrajejunal levodopa infusion (IJLI), compared to 13% of expats.

CONCLUSION

Our pilot data suggest clinical phenotypic differences in presentation of PD in Emiratis population of UAE compared to expats. Worryingly, the data also show delayed treatment initiation, as well as widespread lack of knowledge of advanced therapies in the Emirati population.

摘要

背景

居住在阿拉伯联合酋长国的当地居民(阿联酋人)和外籍人士中帕金森病(PD)的表型差异尚未得到描述,而这对于揭示PD临床异质性的当地情况、指向基因和表观遗传变异可能具有重要意义。

目的

调查阿联酋当地居民和外籍人士中PD运动和非运动临床表现的范围及性质,及其对诊断时间、当地服务提供情况和生活质量的影响,并探讨与可能的基因和表观遗传因素相关的PD护理和病因学方面当前未满足需求的存在情况。

方法

一项横断面的、在一个时间点进行的前瞻性、观察性现实生活研究,研究对象为2019年至2021年从阿联酋各地的PD和神经科诊所招募的171名患者。主要结局包括社会人口统计学数据、运动和非运动症状(NMS),包括认知和睡眠,以及生活质量(QOL)评估。结果:共纳入171名PD患者(52名阿联酋人,119名外籍人士),平均年龄(阿联酋人48.5(13.1),外籍人士64.15(13.1))和平均病程(阿联酋人4.8(3.2),外籍人士6.1(2.9))。在阿联酋人中,诊断后开始治疗的平均延迟时间显著更长(阿联酋人1.2(0.9),外籍人士1.6(1.1)),而从临床表型方面来看,与外籍人士队列中混合亚型占67(56.3)%相比,阿联酋人中有高比例的运动不能型(25(48.1)%)或震颤为主型(22(42.3)%)表型;双震颤为主型,尤其是阿联酋女性(25%),下肢起病的PD占主导。阿联酋人(27.9(24.0))和外籍人士(29.4(15.6))均显示出中度的NMS负担,且NMS概况以睡眠、疲劳、情绪、情感幸福感3.0(1.1)和社会污名3.5(0.9)为主,PDQ8 SI测量的这些方面在阿联酋人中预示着更差的生活质量,而缺乏社会支持2.(1.3)在外籍人群中损害了生活质量。对先进疗法的知晓率较低,只有25%的阿联酋人知晓深部脑刺激术(DBS),相比之下外籍人士为69%。只有2%的阿联酋人听说过阿扑吗啡输注(CSAI),相比之下外籍人士为32%,且没有(0%)阿联酋人知晓空肠内左旋多巴输注(IJLI),相比之下外籍人士为13%。

结论

我们的初步数据表明,与外籍人士相比,阿联酋当地居民中PD的临床表现存在临床表型差异。令人担忧的是,数据还显示治疗开始延迟,以及阿联酋人群中对先进疗法普遍缺乏了解。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fe2f/9410099/433d20d0d24a/jpm-12-01300-g001.jpg

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