Department of Neurology, King's College Hospital and King's College London School of Medicine, University of London, London, UK.
J Neurol Neurosurg Psychiatry. 2010 Oct;81(10):1164-6. doi: 10.1136/jnnp.2009.183863. Epub 2010 Jul 2.
Quality of life (QoL) assessment allows healthcare professionals to appreciate the patient perspective of their disease. This can help us make a better choice from among the various ways we currently measure the severity of a muscle disease such as inclusion body myositis (IBM). However, we cannot assume that QoL in IBM is just related to disease severity as psychosocial factors may play an important role in determining QoL.
Sixty subjects with IBM had assessments of disease severity and concurrent assessment of mood and QoL using the Short-Form 36 (SF-36).
There were significant reductions in Physical functioning, Role physical, General health and Social functioning domains of the SF-36. Functional disability was more indicative of the broader effects of IBM on SF-36 than was the muscle strength sum score. Mood was relatively independent of disease severity and had a different profile of effects on SF-36 domains. Up to 14% of the effect of functional disability on some aspects of QoL was mediated through mood.
The functional disability caused by IBM reduces QoL, but psychosocial factors such as mood affect QoL directly and by influencing the degree to which disease severity reduces QoL. Further study should follow the effects of IBM on QoL over time and look at the influence of other psychosocial factors. Such studies may point to psychosocial interventions that may help improve QoL in IBM even if the disease itself cannot be treated.
生活质量（QoL）评估使医疗保健专业人员能够从患者角度了解其疾病。这可以帮助我们在目前衡量包涵体肌炎（IBM）等肌肉疾病严重程度的各种方法中做出更好的选择。但是，我们不能假设 IBM 的 QoL 仅与疾病严重程度有关，因为心理社会因素可能在确定 QoL 方面起着重要作用。
60 名 IBM 患者接受了疾病严重程度评估，并使用简短 36 项健康调查（SF-36）同时评估了情绪和 QoL。
SF-36 的身体机能、身体角色、总体健康和社会功能领域显著降低。与肌肉力量总和评分相比，功能障碍更能说明 IBM 对 SF-36 的广泛影响。情绪相对独立于疾病严重程度，对 SF-36 各领域的影响也不同。高达 14%的功能障碍对某些 QoL 方面的影响是通过情绪介导的。
IBM 引起的功能障碍降低了 QoL，但情绪等心理社会因素直接影响 QoL，并影响疾病严重程度降低 QoL 的程度。进一步的研究应该跟踪 IBM 对 QoL 的影响随时间的变化，并研究其他心理社会因素的影响。这些研究可能会指出心理社会干预措施，即使不能治疗疾病本身，也可能有助于提高 IBM 的 QoL。
