Morales-Gonzáles J M, Benito-León J, Rivera-Navarro J, Mitchell A J
Department of Research, Ministry of Labour and Social Affairs, Madrid, Spain.
Mult Scler. 2004 Feb;10(1):47-54. doi: 10.1191/1352458504ms967oa.
To describe a holistic and comprehensive approach to the assessment of sufferer's perceptions of health-related quality of life (HRQoL) in a cohort of multiple sclerosis (MS) patients.
The GEDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functional Assessment of Multiple Sclerosis quality of life instrument Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview.
The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9+/-0.9 years. Age, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Qualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. On the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients' physical disability. Furthermore, primary caregivers described the influence of MS on their own occupational status, their nonacceptance of the disease, a perception of a lack of support by other members of the family as well as a 'selfish and intransigent' attitude of the patients themselves.
The analysis of the GEDMA cohort provides valuable information that helps clarify the impact of MS on patients' HRQoL.
描述一种全面综合的方法，用于评估一组多发性硬化症（MS）患者对健康相关生活质量（HRQoL）的认知。
GEDMA（马德里脱髓鞘疾病研究组，西班牙语）研究是一项正在进行的纵向调查，采用定量和定性方法。基线队列由从西班牙马德里13家医院招募的大量MS患者样本组成。我们使用标准化方案收集了有关患者社会人口统计学和健康状况特征的数据，并实施了多发性硬化症生活质量功能评估工具的改良西班牙文版。主要照顾者通过特定方案结合扎里特负担访谈进行访谈。
指标队列包括371例MS患者（68.7%为女性），平均年龄38.9±0.9岁。年龄、性别和临床类型分布与其他基于MS人群的调查相似。有258例（69.5%）复发缓解型（RR）MS患者和113例（30.5%）进展型MS患者。超过三分之一的进展型MS已婚患者以及近四分之一的RRMS患者在被诊断为MS后分居或离婚；71.3%的进展型MS患者以及65.8%的RRMS患者因该病失业。定性分析表明，友谊和家庭关系以及职业状况是受MS影响最显著的方面。另一方面，对主要照顾者的言语分析表明，情感负担与患者的身体残疾有关。此外，主要照顾者描述了MS对他们自身职业状况的影响、他们对疾病的不接受、对家庭其他成员缺乏支持的看法以及患者自身“自私和固执”的态度。
对GEDMA队列的分析提供了有价值的信息，有助于阐明MS对患者HRQoL的影响。
