Understanding the Symptoms and Impacts Experienced by People with Relapsing-Remitting MS: A Qualitative Investigation Using Semi-Structured Interviews.
IF 3.9
3区 医学
Q1 CLINICAL NEUROLOGY
引用次数: 0
Abstract
Introduction: Multiple sclerosis (MS) is a disabling disease with unpredictable clinical manifestations. As clinical assessments may not fully capture the impact of MS on quality of life, they can be complemented by patient-reported outcome (PRO) measures to provide a more comprehensive picture of MS disease state and impact. The objectives of this study were to explore the experiences of people with relapsing-remitting MS, including symptoms and impacts on daily life, and to provide a conceptual model of MS outcomes.
Methods: A literature review of studies that evaluated the experiences of people with MS was completed and combined with semi-structured concept elicitation interviews conducted with 14 people with relapsing-remitting MS in the USA.
Results: The average age of the 14 participants was 43.9 (range 25-64) years, most were White (78.6%) and female (78.6%), and the mean duration since diagnosis was 6.6 (2-10) years. The most bothersome symptoms identified included fatigue (n = 9), cognitive dysfunction (n = 5), mobility/difficulty with walking (n = 3), and vision problems (n = 3). The most commonly reported impacts on daily life were balance problems/instability (n = 13), work life/productivity (n = 12), difficulty walking (n = 11), daily activities/household chores (n = 11), and leisure activities (n = 10).
Conclusion: There was a high frequency of concepts associated with physical function, fatigue, and sensory-motor actions. A conceptual model was developed that captures the disease symptoms, impairments, and impacts identified in the interviews as well as known processes and symptoms identified in the literature search. This model underpins the appropriateness of PRO instruments, such as the PROMIS Fatigue (MS) 8a and PROMIS Physical Function (MS) 15a, which evaluate symptoms and impacts that matter most to people with MS.
了解复发性多发性硬化症患者的症状和影响：一项采用半结构式访谈的定性调查。
导言：多发性硬化症（MS）是一种致残性疾病，临床表现难以预测。由于临床评估可能无法完全反映多发性硬化症对生活质量的影响，因此可以通过患者报告结果（PRO）来补充临床评估，从而更全面地了解多发性硬化症的疾病状态和影响。本研究旨在探讨复发性多发性硬化症患者的经历，包括症状和对日常生活的影响，并提供多发性硬化症结果的概念模型：方法：对评估多发性硬化症患者经历的研究进行文献综述，并结合对 14 名美国复发缓解型多发性硬化症患者进行的半结构式概念激发访谈：14 名参与者的平均年龄为 43.9 岁（25-64 岁不等），大多数为白人（78.6%）和女性（78.6%），确诊后的平均病程为 6.6 年（2-10 年）。最令人困扰的症状包括疲劳（9 例）、认知功能障碍（5 例）、行动/行走困难（3 例）和视力问题（3 例）。最常报告的对日常生活的影响是平衡问题/不稳定（13 例）、工作生活/生产力（12 例）、行走困难（11 例）、日常活动/家务（11 例）和休闲活动（10 例）：结论：与身体功能、疲劳和感觉运动相关的概念出现频率很高。我们建立了一个概念模型，该模型涵盖了访谈中发现的疾病症状、损伤和影响，以及文献检索中发现的已知过程和症状。该模型是 PROMIS 疲劳（多发性硬化症）8a 和 PROMIS 体力功能（多发性硬化症）15a 等 PRO 工具的基础，这些工具可评估对多发性硬化症患者最重要的症状和影响。
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来源期刊
Neurology and Therapy
CLINICAL NEUROLOGY-
CiteScore
5.40
自引率
8.10%
发文量
103
审稿时长
6 weeks
期刊介绍：
Aims and Scope
Neurology and Therapy aims to provide reliable and inclusive, rapid publication for all therapy related research for neurological indications, supporting the timely dissemination of research with a global reach, to help advance scientific discovery and support clinical practice.
Neurology and Therapy is an international, open access, peer reviewed, rapid publication journal dedicated to the publication of high-quality clinical (all phases), observational, real-world and health outcomes research around the discovery, development, and use of neurological and psychiatric therapies, (also covering surgery and devices). Studies relating to diagnosis, pharmacoeconomics, public health, quality of life, and patient care, management, and education are also welcomed.
The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, case reports, trial designs, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Neurology and Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.
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