Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people.
Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British people.
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DOI：
10.1371/journal.pone.0075431
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发表时间：
2013
期刊：
影响因子：
3.7
通讯作者：
Higginson IJ
中科院分区：
文献类型：
--
作者：
Koffman J;Gao W;Goddard C;Burman R;Jackson D;Shaw P;Barnes F;Silber E;Higginson IJ
多发性硬化症现在英国少数民族中更常见，但人们对他们的经历知之甚少，特别是在晚期。我们调查了受MS严重影响的加勒比黑人(BC)和英国白人(WB)患者的疾病进展、症状和心理社会关切。混合方法采用扩展的残疾状况量表≥6对43名BC和43名WB MS患者进行研究，数据来自临床记录、面对面的结构化访谈和嵌套定性成分。计算病情进展指数(PI)和多发性硬化严重程度评分(MSSS)。为了控制选择偏差，在比较统计分析中得出每个患者的倾向分数，并对其进行调整；定性数据使用框架方法进行分析。两组的EDSS中位数均为(6.5；范围：6.0-9.0)。进展指数(PI)和多发性硬化严重程度评分(MSS)根据当前神经学评估的EDSS评分确定BC PWMS更有可能有侵袭性疾病(PI F = 4.04，p = 0.048，MSSS F = 10.30，p<；0.001)。患者达到与不同EDSS水平相当的功能下降水平所需的时间因组而异：EDSS4：BC 2.7年v/S WB 10.2年(U = 258.50，p = 0.013)，EDSS 6：6.1年BC v/S WB 12.7年(U = 535.500，p = 0.011)，EDSS 8：BC 8.7年v/S WB 10.2年。两组都报告了较高的症状负担。BC组较WB组认知功能损害更明显(F = 9.65，p = 0.003)。定性访谈的主题分析提供了与定量结果相一致的结果；BC比WB PWMS更多地提到与他们迅速发展的疾病相关的极端挫败感和未解决的损失/困惑。访谈还揭示了常见多发性硬化症相关症状的中心、含义和影响。应该避免诊断的延误，医疗保健服务可能会证明更频繁的检查是合理的。应该开发文化上可接受的干预措施，更好地支持那些将多发性硬化症视为对身份的攻击的人，以帮助他们实现正常化并增强自我认同感。
Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS. Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach. Median EDSS for both groups was (6.5; range: 6.0–9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001). Patients’ reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6∶6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms. Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.
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影响因子：
4.4
作者：
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通讯作者：
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通讯作者：
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