Beckmann Helen, Heesen Christoph, Augustin Matthias, Blome Christine
Institute for Health Services Research in Dermatology and Nursing (HB, MA, CB), Hamburg, Germany.
Institute of Neuroimmunology and Multiple Sclerosis (CH), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Int J MS Care. 2022 Jul-Aug;24(4):147-153. doi: 10.7224/1537-2073.2020-088. Epub 2021 Dec 7.
Treatment- and work-related aspects have been neglected in health-related quality of life (HRQOL) measures in multiple sclerosis (MS). We aimed to develop a brief instrument covering all important impairment-, activity-, participation-, and treatment-related aspects for use in research and practice.
The 27-item Multiple Sclerosis Quality of Life Questionnaire (MS-QLQ27) was developed using open item collection, a multidisciplinary expert panel, and cognitive pretesting. It was evaluated for reliability, construct validity, and responsiveness in 100 patients presenting with relapse (84 at follow-up ~14 days later). Construct validity was analyzed by correlating the MS-QLQ27 with the disease-specific Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and generic HRQOL instruments. The Expanded Disability Status Scale (EDSS) was used to analyze known-groups validity. Responsiveness was determined as the correlation of changes in MS-QLQ27 scores with changes in validation criteria.
Internal consistency was high (Cronbach α = 0.94 at baseline and 0.93 at follow-up). Convergent validity was supported by direction and magnitude of associations with disease-specific and generic instruments. Correlations with change in convergent criteria were strong, indicating responsiveness. The HAQUAMS showed the strongest associations with the MS-QLQ27. The MS-QLQ27 showed the highest effect size compared with other patient-reported outcomes and the EDSS. It successfully distinguished between levels of disease severity.
These results indicate that the MS-QLQ27 is a reliable, valid, and highly responsive instrument for assessing HRQOL during relapse evolution in MS. Its advantages are that it is brief yet comprehensive, covering work- and treatment-related aspects not addressed in previous measures.
在多发性硬化症(MS)的健康相关生活质量(HRQOL)测量中,与治疗和工作相关的方面一直被忽视。我们旨在开发一种简短的工具,涵盖所有重要的与损伤、活动、参与和治疗相关的方面,用于研究和实践。
通过开放式项目收集、多学科专家小组和认知预测试,开发了27项多发性硬化症生活质量问卷(MS-QLQ27)。对100例复发患者(84例在约14天后进行随访)进行了可靠性、结构效度和反应性评估。通过将MS-QLQ27与MS中特定疾病的汉堡生活质量问卷(HAQUAMS)和通用HRQOL工具进行相关性分析来评估结构效度。使用扩展残疾状态量表(EDSS)分析已知组效度。反应性通过MS-QLQ27分数变化与验证标准变化的相关性来确定。
内部一致性较高(基线时Cronbach α = 0.94,随访时为0.93)。与特定疾病和通用工具的关联方向和强度支持了收敛效度。与收敛标准变化的相关性很强,表明具有反应性。HAQUAMS与MS-QLQ27的关联最强。与其他患者报告结局和EDSS相比,MS-QLQ27显示出最高的效应量。它成功地区分了疾病严重程度的不同水平。
这些结果表明,MS-QLQ27是一种可靠、有效且反应性高的工具,用于评估MS复发过程中的HRQOL。其优点是简短而全面,涵盖了先前测量中未涉及的与工作和治疗相关的方面。