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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

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....

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9410099/
https://www.ncbi.nlm.nih.gov/pubmed/36013249
http://dx.doi.org/10.3390/jpm12081300
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author 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
author_facet 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
author_sort Metta, Vinod
collection PubMed
description 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.
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spelling pubmed-94100992022-08-26 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 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 J Pers Med Article 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. MDPI 2022-08-09 /pmc/articles/PMC9410099/ /pubmed/36013249 http://dx.doi.org/10.3390/jpm12081300 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
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
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9410099/
https://www.ncbi.nlm.nih.gov/pubmed/36013249
http://dx.doi.org/10.3390/jpm12081300
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