Ahmad Hasnat, van der Mei Ingrid, Taylor Bruce V, Campbell Julie A, Palmer Andrew J
Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS 7000, Australia.
Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS 7000, Australia.
Mult Scler Relat Disord. 2020 Sep;44:102358. doi: 10.1016/j.msard.2020.102358. Epub 2020 Jul 3.
Health-related quality of life (HRQoL) has not been assessed in Australians with multiple sclerosis (MS) using a preferentially sensitive multi-attribute utility instrument.
To assess HRQoL and to quantify the impact of disability on health state utility values (HSUVs), and the physical and psychosocial health of people with MS using the Assessment of Quality of Life-8-Dimension (AQoL-8D) instrument.
We estimated HSUVs and the unique composite individual and super dimensional (physical and psychosocial) scores of the AQoL-8D for a large, representative sample (n=1,577) of Australians with MS. The estimates were compared to Australian general population norms and broken down by disability severity, classified as no disability (Expanded Disability Status Scale [EDSS] level: 0), mild (EDSS: 1-3.5), moderate (EDSS: 4-6) and severe (EDSS: 6.5-9.5). A multivariable regression model adjusted the association between MS disability severity and HSUVs for age, sex, MS onset type, DMTs usage status, and MS duration.
Mean overall HSUV at 0.61 (95% confidence interval [CI]: 0.60-0.62) was 0.18 units lower than the Australian population norm. HSUV decreased with increasing disability severity: 0.81 (95% CI: 0.80-0.83), 0.65 (95% CI: 0.63-0.67), 0.54 (95% CI: 0.52-0.56) and 0.48 (95% CI: 0.46-0.50) for no, mild, moderate and severe disability, respectively. The mean Physical super-dimension score of 0.57 (95% CI: 56-0.58) was 0.21 units lower than the Australian norm and the Psychosocial super-dimension of 0.33(95% CI: 32-0.34) was 0.16 units lower. Lower HRQoL was primarily driven by reduced scores on Independent living (-0.23), Pain (-0.15), Relationships (-0.13), Coping (-0.12), and Self-worth (-0.12).
MS impacts all aspects of HRQoL. Effective pain management and support to maintain independent living, relationships, and self-worth can significantly improve the HRQoL of people with MS. Early diagnosis and affordable access to effective treatments to slow or prevent disability accumulation may also be helpful.
尚未使用优先敏感的多属性效用工具对澳大利亚多发性硬化症（MS）患者的健康相关生活质量（HRQoL）进行评估。
使用生活质量评估-8维度（AQoL-8D）工具评估MS患者的HRQoL，并量化残疾对健康状态效用值（HSUVs）以及身体和心理社会健康的影响。
我们对一大组具有代表性的澳大利亚MS患者样本（n = 1,577）估计了HSUVs以及AQoL-8D的独特综合个体和超维度（身体和心理社会）得分。将这些估计值与澳大利亚一般人群规范进行比较，并按残疾严重程度细分，分为无残疾（扩展残疾状态量表[EDSS]水平：0）、轻度（EDSS：1 - 3.5）、中度（EDSS：4 - 6）和重度（EDSS：6.5 - 9.5）。多变量回归模型针对年龄、性别、MS发病类型、疾病修饰治疗（DMTs）使用状态和MS病程调整了MS残疾严重程度与HSUVs之间的关联。
平均总体HSUV为0.61（95%置信区间[CI]：0.60 - 0.62），比澳大利亚人群规范低0.18个单位。HSUV随着残疾严重程度的增加而降低：无残疾、轻度、中度和重度残疾的HSUV分别为0.81（95% CI：0.80 - 0.83）、0.65（95% CI：0.63 - 0.67）、0.54（95% CI：0.52 - 0.56）和0.48（95% CI：0.46 - 0.50）。身体超维度平均得分为0.57（95% CI：0.56 - 0.58），比澳大利亚规范低0.21个单位，心理社会超维度得分为0.33（95% CI：0.32 - 0.34），比澳大利亚规范低0.16个单位。较低的HRQoL主要由独立生活（-0.23）、疼痛（-0.15）、人际关系（-0.13）、应对能力（-0.12）和自我价值感（-0.12）得分降低所驱动。
MS影响HRQoL的各个方面。有效的疼痛管理以及对维持独立生活、人际关系和自我价值感的支持可显著改善MS患者的HRQoL。早期诊断以及获得负担得起的有效治疗以减缓或预防残疾累积可能也有帮助。
