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多发性硬化症健康资源利用调查(MS-HRS):开发与验证研究。

The Multiple Sclerosis Health Resource Utilization Survey (MS-HRS): Development and Validation Study.

作者信息

Ness Nils-Henning, Haase Rocco, Kern Raimar, Schriefer Dirk, Ettle Benjamin, Cornelissen Christian, Akguen Katja, Ziemssen Tjalf

机构信息

University Hospital Carl Gustav Carus, Dresden, Germany.

MedicalSyn GmbH, Dresden, Germany.

出版信息

J Med Internet Res. 2020 Mar 17;22(3):e17921. doi: 10.2196/17921.

Abstract

BACKGROUND

Survey-based studies are frequently used to describe the economic impact of multiple sclerosis (MS). However, there is no validated health resource survey available, preventing comparison of study results and meaningful conclusions regarding the efficiency of long-term treatments.

OBJECTIVE

The aim of this study was to develop and validate a tablet- and paper-based MS health resource utilization survey.

METHODS

We developed and validated the Multiple Sclerosis Health Resource Utilization Survey (MS-HRS), consisting of 24 cost items for paper and tablet users. Data for validation came from two large German observational studies. Survey practicability was assessed according to the response rate. Reliability was described using test-retest reliability as well as Guttman lambda. Construct validity was assessed as convergent and discriminant validity via correlations with associated patient-reported outcomes and known-group analyses.

RESULTS

In total, 2207 out of 2388 (response rate: 92.4%) patients completed the survey and were included to determine psychometric properties. The test-retest reliability had an intraclass correlation coefficient of 0.828 over a course of 3 months. Convergent validity analyses showed that total costs correlated positively with increased disability (r=0.411, P<.001). For discriminant validity, correlations of total costs with the Treatment Satisfaction Questionnaire for Medication ranged from -0.006 (convenience) to -0.216 (effectiveness). The mean annual cost was €28,203 (SD €14,808) (US $39,203; SD US $20,583) with disease-modifying therapies.

CONCLUSIONS

The MS-HRS is a multilingual, reliable, valid, electronically available, and easy-to-administer questionnaire providing a holistic cross-sectional and longitudinal assessment of resource utilization in patients with MS.

摘要

背景

基于调查的研究经常被用于描述多发性硬化症(MS)的经济影响。然而,目前尚无经过验证的健康资源调查,这阻碍了研究结果的比较以及关于长期治疗效率的有意义结论的得出。

目的

本研究的目的是开发并验证一种基于平板电脑和纸质的MS健康资源利用调查。

方法

我们开发并验证了多发性硬化症健康资源利用调查(MS-HRS),该调查包括针对纸质和平板电脑用户的24项成本项目。验证数据来自两项大型德国观察性研究。根据回复率评估调查的实用性。使用重测信度以及古特曼λ系数描述信度。通过与相关患者报告结局的相关性和已知组分析评估结构效度,以确定收敛效度和区分效度。

结果

在2388名患者中,共有2207名(回复率:92.4%)完成了调查,并被纳入以确定心理测量特性。在3个月的时间里,重测信度的组内相关系数为0.828。收敛效度分析表明,总成本与残疾程度增加呈正相关(r = 0.411,P <.001)。对于区分效度,总成本与药物治疗满意度问卷的相关性范围为-0.006(便利性)至-0.216(有效性)。使用疾病修饰疗法时,年平均成本为28,203欧元(标准差14,808欧元)(39,203美元;标准差20,583美元)。

结论

MS-HRS是一份多语言、可靠、有效、可电子获取且易于管理的问卷,可对MS患者的资源利用进行全面的横断面和纵向评估。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d2f5/7109610/1386a051a0df/jmir_v22i3e17921_fig1.jpg

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