Kobelt Gisela, Berg J, Lindgren P, Izquierdo G, Sánchez-Soliño O, Pérez-Miranda J, Casado M A
Lund University, Lund, Sweden.
Eur J Health Econ. 2006 Sep;7 Suppl 2:S65-74. doi: 10.1007/s10198-006-0381-y.
This cost-of-illness analysis is based on information from 1.848 patients in Spain and is part of a Europe-wide study on the costs of multiple sclerosis. The objective was to analyze the costs and quality of life (QOL) related to the level of disease severity and progression. Patients were identified by the Asociación Española de Esclerosis Múltiple (AEDEM) and participated in the survey by answering a mail questionnaire (response rate 31.8%). In addition to details on the disease (type of disease, relapses, level of functional disability), the questionnaire asked for information on all resource consumption, medical, non-medical, work absence and informal care, as well as utility (QOL). The mean age of the cohort was 45 years, and only 5.5% of patients were 65 years of age or more. Approximately 36% of patients had mild disease (Expanded Disability Status Scale [EDSS] score of 0-3), 44.8% had moderate disease (EDSS score of 4-6.5) and 17.7% had severe disease (EDSS score > or =7). The mean EDSS score in the sample was 4.5 (median 5.0), with a utility of 0.554. Costs and utility are highly correlated with disease severity. Workforce participation decreases from around 70% in early disease to less than 5% in the very late stages. Hospitalization is very infrequent in early disease, representing less than euro 1.300 per patient per year for patients at EDSS scores <6, but increases steeply for patients at scores > or =7. Ambulatory care increases fivefold between early and late disease, while investments and services increase from basically no cost to just over euro 6.000 at EDSS scores > or =7. Productivity losses increase more than eightfold, and informal care increases from euro 593 at EDSS scores of 0-1 to nearly euro 34.228 at scores of 8-9. Hence, total mean costs per patient are driven by the distribution of the severity levels in the sample, increasing from euro 10.425 at EDSS scores of 0-1 to euro 45.264 at a score of 7, and euro 65.693 at scores of 8-9. The same is true for utility, which decreases from 0.865 to 0.084 as patients progress from the mildest to the most severe disability levels. However, the utility loss compared to the age- and gender-matched general population is high at all levels of the disease ( approximately 0.25 in patients below 30 years of age with an EDSS score of 2-3, and approximately 0.4 in patients over 60 years of age and a score of > or =6), leading to an estimated annual loss of 0.276 quality-adjusted life-year per patient. Relapses for patients with an EDSS score below 5 are associated with a cost of approximately euro 2.750 and a utility loss of 0.1 during the quarter in which they occur.
这项疾病成本分析基于西班牙1848名患者的信息，是一项欧洲范围内关于多发性硬化症成本研究的一部分。其目的是分析与疾病严重程度和进展水平相关的成本及生活质量（QOL）。患者由西班牙多发性硬化症协会（AEDEM）确定，并通过回复邮件问卷参与调查（回复率31.8%）。除了疾病详情（疾病类型、复发情况、功能残疾水平）外，问卷还询问了所有资源消耗、医疗、非医疗、工作缺勤和非正式护理方面的信息，以及效用（生活质量）。该队列的平均年龄为45岁，只有5.5%的患者年龄在65岁及以上。约36%的患者患有轻度疾病（扩展残疾状态量表[EDSS]评分为0 - 3），44.8%患有中度疾病（EDSS评分为4 - 6.5），17.7%患有重度疾病（EDSS评分≥7）。样本中的平均EDSS评分为4.5（中位数为5.0），效用值为0.554。成本和效用与疾病严重程度高度相关。劳动力参与率从疾病早期的约70%下降到疾病极晚期的不到5%。早期疾病住院情况非常少见，EDSS评分<6的患者每年人均住院费用不到1300欧元，但评分≥7的患者住院费用急剧增加。门诊护理在疾病早期和晚期之间增加了五倍，而投资和服务从基本无成本增加到EDSS评分≥7时的略高于6000欧元。生产力损失增加了八倍多，非正式护理从EDSS评分为0 - 1时的593欧元增加到评分为8 - 9时的近34228欧元。因此，每位患者的总平均成本受样本中严重程度水平分布的驱动，从EDSS评分为0 - 1时的10425欧元增加到评分为7时的45264欧元，评分为8 - 9时为65693欧元。效用情况也是如此，随着患者从最轻微残疾水平发展到最严重残疾水平，效用从0.865降至0.084。然而，在疾病的所有阶段，与年龄和性别匹配的普通人群相比，效用损失都很高（EDSS评分为2 - 3的30岁以下患者约为0.25，60岁以上且评分≥6的患者约为0.4）导致估计每位患者每年损失0.276个质量调整生命年。EDSS评分低于5的患者复发时，在复发季度的成本约为2750欧元，效用损失为0.1。
