Department of Public Health, EA3279 Self-perceived Health Assessment Research Unit, Timone University, APHM, Marseille, France.
PLoS One. 2012;7(12):e50056. doi: 10.1371/journal.pone.0050056. Epub 2012 Dec 11.
Memory disturbances, in particular episodic verbal memory dysfunction, are the most frequent cognitive impairment observed in multiple sclerosis (MS) patients. The use of self-reported outcomes for evaluating treatment and managing care of these subjects has been questioned. The aim of this study was to provide new evidence about the suitability of self-reported outcomes for use in this impaired population by exploring the internal structure, reliability and external validity of a specific quality of life (QoL) instrument, the Multiple Sclerosis International Quality of Life questionnaire (MusiQoL).
cross-sectional study.
MS patients of any disease subtype.
sociodemographic (age, gender, marital status, education level, and occupational activity) and clinical data (MS subtype, Expanded Disability Status Scale, disease duration); QoL (MusiQoL and SF36); and memory performance (Grober and Buschke test). In accordance with the French norms of the memory test, non-impaired and impaired populations were defined for short- and long-delay free composites and for short- and long-delay total composites. For the 8 populations, psychometric properties were compared to those reported from the reference population assessed in the validation study.
One hundred and twenty-four consecutive patients were enrolled. The analysis performed in the impaired populations showed that the questionnaire structure adequately matched the initial structure of the MusiQoL. The unidimensionality of the dimensions was preserved, and the internal/external validity indices were close to those of the reference population.
CONCLUSIONS/SIGNIFICANCE: Our study suggests that memory dysfunction did not compromise the reliability or validity of the self-reported QoL questionnaires.
记忆障碍,尤其是情景性言语记忆障碍,是多发性硬化症(MS)患者最常见的认知障碍。使用自我报告的结果来评估这些患者的治疗和护理管理已经受到质疑。本研究的目的是通过探索特定生活质量(QoL)工具,多发性硬化症国际生活质量问卷(MusiQoL)的内部结构、可靠性和外部有效性,为使用自我报告的结果来评估这一受损人群提供新的证据。
横断面研究。
任何疾病亚型的 MS 患者。
社会人口统计学(年龄、性别、婚姻状况、教育程度和职业活动)和临床数据(MS 亚型、扩展残疾状况量表、疾病持续时间);QoL(MusiQoL 和 SF36);和记忆表现(Grober 和 Buschke 测试)。根据记忆测试的法国规范,为短延迟和长延迟自由组合以及短延迟和长延迟总组合定义了非受损和受损人群。对于 8 个群体,与在验证研究中评估的参考群体报告的心理测量特性进行了比较。
共纳入 124 例连续患者。在受损人群中进行的分析表明,问卷结构与 MusiQoL 的初始结构相匹配。各维度的单维度结构得以保留,内部/外部有效性指标接近参考人群。
结论/意义:我们的研究表明,记忆功能障碍不会影响自我报告的 QoL 问卷的可靠性或有效性。