The Dermatomyositis Disease Symptom Questionnaire (DM-DSQ): A Measure to Assess the Patient Experience of Dermatomyositis Symptoms.

IF 3.6 2区 医学 Q2 RHEUMATOLOGY
Lisa Christopher-Stine, Anna Ciesluk, Hector Chinoy, Namita A Goyal, Kaniah Gunter, David Isenberg, Adrian Kielhorn, Ingrid E Lundberg, Tahseen Mozaffar, Sanjay Rakhade, Gerrit Vandenberg, Rohit Aggarwal
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Abstract

Objective: Dermatomyositis (DM) symptoms negatively affect the quality of life of individuals living with the disease. Disease-specific, patient-reported outcome (PRO) instruments are needed to assess symptoms important to individuals with DM. This study aimed to conceptualize patient DM experience and disease activity definition to refine the development of the Dermatomyositis Disease Symptom Questionnaire (DM-DSQ), a novel PRO instrument capturing patient-reported symptoms.

Methods: An observational, qualitative study was conducted with 30 individuals with DM (aged ≥ 18 yrs) in the US. A 1-hour semistructured interview, including concept elicitation and cognitive debriefing, was conducted with each participant. Inductive coding was used to identify concepts; a saturation analysis was conducted to confirm sample size. Concepts from transcripts were used to refine the preliminary conceptual model and DM-DSQ items.

Results: Concept elicitation analysis findings included disease symptoms (eg, muscle weakness) and functional impacts (eg, walking). The analysis achieved conceptual saturation; the first 5 interviews uncovered most of the concepts. During cognitive debriefing of the DM-DSQ, participants found the items relevant, comprehensive, and easily understood (except for "skin sensitivity in sunlight"). The revised DM-DSQ content appears preliminarily valid in the patient population surveyed, pending further additions and debriefing based on refinement of the preliminary conceptual disease model and items.

Conclusion: The DM-DSQ is being used in a phase II clinical trial and could become a valuable tool for studies evaluating PROs in patients with DM. Preliminary results indicate its content validity; extensive psychometric analysis using clinical trial data will determine its ability to capture symptoms for patients with DM.

皮肌炎疾病症状问卷(DM-DSQ):评估患者对皮肌炎症状体验的测量方法。
目的:皮肌炎(DM)症状会对患者的生活质量产生负面影响。我们需要针对疾病的患者报告结果(PRO)工具来评估皮肌炎患者的重要症状。本研究对皮肌炎患者的经历和疾病活动性进行了概念化定义,从而改进了新型PRO工具--皮肌炎疾病症状问卷(DM-DSQ)的开发,该工具可捕捉患者报告的症状:方法:我们对美国 30 名皮肌炎患者(年龄≥18 岁)进行了一项定性观察研究。对每位参与者进行了 1 小时的半结构化访谈,包括概念激发和认知汇报。采用归纳编码法确定概念;进行饱和分析以确认样本量。记录誊本中的概念用于完善初步概念模型和 DM-DSQ 项目:概念激发分析结果包括疾病症状(如肌肉无力)和功能影响(如行走)。分析达到了概念饱和:前 5 个访谈揭示了大部分概念。在对 DMDSQ 进行认知汇报时,参与者认为项目相关、全面且易于理解("阳光下皮肤敏感 "除外)。修订后的 DM-DSQ 内容初步看来对所调查的患者群体有效,但还有待于根据对初步疾病概念模型和项目的改进情况进一步补充和汇报:DM-DSQ目前正用于一项二期临床试验,可成为评估DM患者PROs研究的重要工具。初步结果显示了其内容的有效性;使用临床试验数据进行的广泛心理计量分析将确定其捕捉 DM 患者症状的能力。
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来源期刊
Journal of Rheumatology
Journal of Rheumatology 医学-风湿病学
CiteScore
6.50
自引率
5.10%
发文量
285
审稿时长
1 months
期刊介绍: The Journal of Rheumatology is a monthly international serial edited by Earl D. Silverman. The Journal features research articles on clinical subjects from scientists working in rheumatology and related fields, as well as proceedings of meetings as supplements to regular issues. Highlights of our 41 years serving Rheumatology include: groundbreaking and provocative editorials such as "Inverting the Pyramid," renowned Pediatric Rheumatology, proceedings of OMERACT and the Canadian Rheumatology Association, Cochrane Musculoskeletal Reviews, and supplements on emerging therapies.
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