A comparative study of South African and Portuguese amyotrophic lateral sclerosis cohorts

Braga, Anna Caroline; Gromicho, Marta; Pinto, Susana; Carvalho, Mamede de; Henning, Franclo

doi:10.1016/j.jns.2020.116857

Cited by 13 publications

(8 citation statements)

References 38 publications

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“…In addition, epidemiological data from diverse populations could potentially contribute significantly to understanding the impact of ancestral origin on the development of complex disorders such as ALS. A recent study suggested a significantly lower 12‐ and 24‐month survival rate in South African compared to Portuguese ALS patients, which is likely to result in a lower than expected prevalence [5]. Studies investigating the incidence of ALS in people of African ancestry, however, were all performed among those living in Western countries, and suggest a lower incidence than in white population groups [6–8].…”

Section: Introductionmentioning

confidence: 99%

Incidence of motor neuron disease/amyotrophic lateral sclerosis in South Africa: a 4‐year prospective study

Henning

Heckmann

Naidu

et al. 2020

Euro J of Neurology

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Background and purpose: Little is known about the epidemiological features of amyotrophic lateral sclerosis (ALS) in sub-Saharan Africa, and data from the region are limited to clinical series or case reports. The aim of the study was to investigate the incidence rate and presentation of ALS in an ethnically diverse region of South Africa. Methods: We performed a 4-year prospective incidence study in the Western Cape Province of South Africa between 1 July 2014 and 30 June 2018, and used a two-source capture-recapture method for case ascertainment. Age-and sex-adjusted incidence rates (ASAIRs) were calculated using the 2010 US population as the reference. Results: A total of 203 incident cases were identified over the study period, resulting in a crude incidence rate (IR) of 1.09 [95% confidence interval (CI) 0.94-1.24] per 100 000 person-years in the at-risk population (aged >15 years). Capture-recapture analysis resulted in an estimated IR of 1.11 (95% CI 1.01-1.22) per 100 000 person-years. The ASAIR was 1.67 (95% CI 1.09-2.26) overall; 1.99 (95% CI 1.60-2.39) for men and 1.37 (95% CI 1.06-1.68) for women. When analysed separately, there was a substantial difference in ASAIRs between the different population groups, with the highest in the European ancestry group (2.62; 95% CI 2.49-2.75), the lowest in the African ancestry group (0.56, 95% CI 0.0-1.23), and an ASAIR in between these two in the mixed ancestry group (1.09, 95% CI 0.80-1.37). Conclusion: The overall incidence of ALS in the Western Cape Province of South Africa appears to be lower than in North African and Western countries, but higher than in Asian countries. As suggested by previous epidemiological studies, ALS may be less frequent in people of African ancestry.

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Section: Introductionmentioning

confidence: 99%

Incidence of motor neuron disease/amyotrophic lateral sclerosis in South Africa: a 4‐year prospective study

Henning

Heckmann

Naidu

et al. 2020

Euro J of Neurology

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“…To help with these financial challenges, subsidies are available for some supportive equipment such as NIV through the local patient advocacy group, MND Malaysia, but a recent study on patients from the same center found that despite this provision, not all patients were willing to use NIV [14]. Similar poor acceptance pattern has been observed in other LMIC countries (Korea, China and South Africa) [15][16][17].…”

Section: Discussionmentioning

confidence: 91%

A Survey On patients’ Disease Perception and the Impact of the COVID-19 Pandemic On Persons Living With Amyotrophic Lateral Sclerosis in Malaysia

Edgar

Abdul-Aziz

Loh

et al. 2021

Neurodegener. Dis. Manag.

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Aim: To investigate the patients' perception of their disease, its management and the impact of the COVID-19 pandemic on persons living with amyotrophic lateral sclerosis (ALS) in Malaysia. Patients & methods: An online survey comprising 42 questions was conducted on ALS patients during the peak of the COVID-19 pandemic. Results: Responses were received from 37/60 (62%) participants with ALS directly or through their caregivers. During the COVID-19 pandemic, two-thirds of patients were negatively impacted by the sudden disruption to their hospital appointments, rehabilitation sessions and reduced social interactions. Conclusion: This study provided insight into patients' perception of their care and management of ALS in Malaysia which will facilitate in implementing changes that can improve care to persons living with this devastating illness.

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“…Thirdly, since 2016, the expenditure for riluzole use has gradually been covered by basic medical insurance in different provinces of China, making it more accessible to patients with ALS in the last 2 years of our study [44]. However, notably, similar to other low‐ and middle‐income countries, the current percentage of patients using riluzole is only 71.4% in China, and an enormous gap persists compared with developed countries such as Germany (86.3%) [45,46]. China is the largest developing country in the world, and the price of riluzole is more than 4300 RMB, which is more than twice the average disposable income in China in 2016 [47].…”

Section: Discussionmentioning

confidence: 99%

Trends in the clinical features of amyotrophic lateral sclerosis: A 14‐year Chinese cohort study

Chen

Tang

et al. 2021

Euro J of Neurology

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Background and purpose: The aim was to determine the transitional patterns in the clinical characteristics, treatments and comorbidities in amyotrophic lateral sclerosis (ALS) patients over the past 14 years using data from a large clinical cohort in mainland China. Methods: Sporadic ALS patients who visited the Peking University Third Hospital from January 2005 to December 2018 were included in this study. The 14 years were divided into three periods, and changes in the baseline characteristics of the participants were analyzed at 5-year intervals. Results: In total, 3410 patients with sporadic ALS were recruited: 2181 were men and 1229 were women. The proportion of patients with bulbar-onset ALS increased from 13.0% in 2005-2009 to 19.5% in 2015-2018 (p < 0.001). The mean (standard deviation) age at onset increased from 49.5 (11.4) years in 2005-2009 to 53.0 (11.0) years in 2015-2018 (p < 0.001). ALS patients with diabetes or hypertension showed a delay in ALS onset, and the delay was even more apparent when the patients had both comorbidities. The proportion of riluzole users in 2015-2018 was approximately 2.5-fold of that in 2005-2009 (p < 0.001). Conclusions:In the context of a lack of clinical data on ALS in mainland China, this study evaluated a large cohort of patients diagnosed over a 14-year period. The age at onset and percentage of patients who used riluzole both increased over the study period.Additionally, it was found that patients with comorbidities such as diabetes and hypertension had a delayed age of ALS onset.

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A comparative study of South African and Portuguese amyotrophic lateral sclerosis cohorts

Cited by 13 publications

References 38 publications

Incidence of motor neuron disease/amyotrophic lateral sclerosis in South Africa: a 4‐year prospective study

Incidence of motor neuron disease/amyotrophic lateral sclerosis in South Africa: a 4‐year prospective study

A Survey On patients’ Disease Perception and the Impact of the COVID-19 Pandemic On Persons Living With Amyotrophic Lateral Sclerosis in Malaysia

Trends in the clinical features of amyotrophic lateral sclerosis: A 14‐year Chinese cohort study

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