Centre for Primary Care and Public Health, Queen Mary University of London, London, UK.
Department of Sociology, University of York, York, UK.
BMJ Open. 2019 Feb 12;9(2):e022462. doi: 10.1136/bmjopen-2018-022462.
There is an immense socioeconomic burden for both the patients with motor neuron disease (MND) and their families. The aim of this study is to evaluate the extent to which the provision offered by the Motor Neurone Disease Association is distributed among patients with MND living in the ethnically and socially diverse area of Greater London, according to the patients' socioeconomic situation and needs.
Greater London, where age and sex-adjusted prevalence rates of MND in 2016 were calculated.
Prevalent MND cases in Greater London, using anonymised data extracted from the Association's database.
Demographic and socioeconomic characteristics PRIMARY AND SECONDARY OUTCOME MEASURES: Receiving a Motor Neurone Disease Association grant, and the amount of money received.
396 individuals with amyotrophic lateral sclerosis were detected, the age-specific and sex-specific prevalence of MND was 4.02 per 100 000 inhabitants, higher among men (5.13 per 100 000) than women (3.01 per 100 000). Men were statistically significantly 40% less likely to receive a grant compared with women; among grant recipients, the younger the age of the participant, the higher the size of the grant received. The Index of Multiple Deprivation was not associated with either receiving a grant nor the amount of money received, among recipients.
Financial support by the Motor Neurone Disease Association is provided across individuals and across boroughs regardless of their socioeconomic circumstances. Differences that benefits women and younger patients were detected.
运动神经元病(MND)患者及其家庭面临巨大的社会经济负担。本研究旨在评估根据患者的社会经济状况和需求,向居住在伦敦大伦敦地区的 MND 患者提供的运动神经元疾病协会服务的分布程度。
伦敦大伦敦,2016 年计算了 MND 的年龄和性别调整患病率。
使用从协会数据库中提取的匿名数据,对大伦敦的 MND 现患病例进行了评估。
人口统计学和社会经济学特征
获得运动神经元疾病协会赠款以及获得的金额。
检测到 396 例肌萎缩侧索硬化症患者,MND 的年龄和性别特异性患病率为每 10 万人中有 4.02 例,男性(每 10 万人中有 5.13 例)高于女性(每 10 万人中有 3.01 例)。与女性相比,男性获得赠款的可能性统计学上显著降低了 40%;在获得赠款的人中,参与者年龄越小,获得的赠款金额越高。在接受者中,多发性剥夺指数与获得赠款或获得的金额均无关。
运动神经元疾病协会提供的财务支持面向个人和行政区,无论其社会经济状况如何。发现女性和年轻患者受益更多。