Samaranayake Navami, Dissanayaka Pulasthi, Gunarathna Isuru, Gonawala Lakmal, Wijekoon Nalaka, Rathnayake Pyara, Sirisena Darshana, Gunasekara Harsha, Dissanayake Athula, Senanayake Sunethra, Anand Akshay, Satyamoorthy Kapaettu, Dalal Ashwin, de Silva K Ranil D
Interdisciplinary Centre for Innovation in Biotechnology and Neuroscience, University of Sri Jayewardenepura, Nugegoda, Sri Lanka.
Lady Ridgeway Hospital for Children, Colombo, Sri Lanka.
Ann Neurosci. 2020 Jul;27(3-4):91-97. doi: 10.1177/0972753120950069. Epub 2020 Nov 13.
Progressive neurological genetic diseases are not rare. They cause psychosocial damages to its victims. This article focuses on common psychosocial issues faced by those from the developing world.
A multicentre observational survey of 246 patients from teaching hospitals in Sri Lanka. Participants were clinically and genetically confirmed by neurologists and the Interdisciplinary Centre for Innovation in Biotechnology and Neuroscience (ICIBN) respectively from 2014 to 2018. Convenience sample with random geographical distribution. Factors were equally weighted. ANOVA, Student's t-test and chi-square analysis were used. Statistical Software R Statistics-version 3.5 and one-sample t-test with CI = 95% was used. This study meets the ethical guidelines of the local institutional review boards which are in compliance with the Helsinki Declaration.
Sample included 184 males and 62 females of 3-76 years with either Duchenne muscular dystrophy (n=121), spinocerebellar ataxia ( = 87) or Huntington disease ( = 38). Mean income of the affected is lower than the standard average monthly income ( ≤ .001). Consultation visits depend on the monthly income (CI 20421.074-34709.361; ≤ .001).
Poverty is inversely proportionate to the patients' living conditions. As developing countries are financially challenged, it is a societal challenge to rebuild our values to enhance their living status.
进行性神经遗传性疾病并不罕见。它们会对患者造成社会心理损害。本文重点关注发展中世界患者面临的常见社会心理问题。
对来自斯里兰卡教学医院的246名患者进行多中心观察性调查。参与者分别于2014年至2018年由神经科医生以及生物技术与神经科学创新跨学科中心（ICIBN）进行临床和基因确诊。采用具有随机地理分布的便利样本。各因素权重相等。使用方差分析、学生t检验和卡方分析。采用统计软件R Statistics - 3.5版本以及置信区间为95%的单样本t检验。本研究符合当地机构审查委员会符合《赫尔辛基宣言》的伦理准则。
样本包括184名男性和62名女性，年龄在3至76岁之间，患有杜氏肌营养不良症（n = 121）、脊髓小脑共济失调（n = 87）或亨廷顿病（n = 38）。患者的平均收入低于标准月平均收入（P ≤.001）。就诊次数取决于月收入（置信区间20421.074 - 34709.361；P ≤.001）。
贫困与患者的生活条件成反比。由于发展中国家面临财政挑战，重塑我们的价值观以提高他们的生活水平是一项社会挑战。
