弗里德赖希共济失调评定量表在脊髓小脑性共济失调患者中的内容效度。

IF 3.9 3区医学 Q1 CLINICAL NEUROLOGY

Neurology and Therapy Pub Date : 2025-04-01 Epub Date: 2025-01-15 DOI:10.1007/s40120-024-00704-8

Michele Potashman, Katja Rudell, Naomi Suminski, Rinchen Doma, Maggie Heinrich, Linda Abetz-Webb, Melissa Wolfe Beiner, Vlad Coric, Liana S Rosenthal, Sheng-Han Kuo, Theresa Zesiewicz, Terry D Fife, Bart van de Warrenburg, Giovanni Ristori, Matthis Synofzik, Sub Subramony, Susan Perlman, Jeremy D Schmahmann, Gil L'Italien

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引用次数: 0

摘要

简介：弗里德赖希共济失调评定量表-日常生活活动（FARS-ADL）是一种经过验证和高度应用的评估弗里德赖希共济失调患者的方法。虽然FARS-ADL对脊髓小脑性共济失调（SCA）的结构效度已得到证实，但内容效度尚未建立。方法：患有SCA1或SCA3的个体（n = 7）和具有SCA专业知识的医疗保健专业人员（HCPs）（n = 8）参加了定性访谈，评估fas - adl用于评估SCA个体的相关性、清晰度和临床意义。访谈由ATLAS进行记录、转录、编码和分析。Ti v22软件。结果：SCA患者最常报告的FARS-ADL概念是行走困难（n = 7/7）、跌倒（n = 6/7）、言语困难（n = 4/7）和吞咽困难（n = 3/7）。SCA患者报告所有fas - adl项目均相关；步态和行走（n = 7/7）、膀胱功能（n = 6/7）和跌倒（n = 6/7）被认为非常相关。所有HCPs （n = 8/8）报告大多数fas - adl项目与SCA患者相关；坐姿质量被认为是最不相关的。HCPs报告的有意义的变化为单个FARS-ADL项目得分变化1-2分（n = 7/7），总分变化1-3分（n = 6/6），根据SCA亚型，任何项目和/或总分的稳定性≥1年（n = 5/8）。认知汇报支持FARS-ADL的清晰和理解。建议的改进包括改进穿衣、跌倒、行走和膀胱功能项目的反应选项。结论：研究结果证实了大多数fas - adl项目在轻度至中度SCA1和SCA3个体中使用的内容效度，并为反应选项提供了改进建议。

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Content Validity of the Friedreich Ataxia Rating Scale in Patients with Spinocerebellar Ataxia.

Introduction: The Friedreich Ataxia Rating Scale-Activities of Daily Living (FARS-ADL) is a validated and highly utilized measure for evaluating patients with Friedreich Ataxia. While construct validity of FARS-ADL has been shown for spinocerebellar ataxia (SCA), content validity has not been established.

Methods: Individuals with SCA1 or SCA3 (n = 7) and healthcare professionals (HCPs) with SCA expertise (n = 8) participated in qualitative interviews evaluating the relevance, clarity, and clinical meaningfulness of FARS-ADL for assessment of individuals with SCA. Interviews were recorded, transcribed, coded, and analyzed by ATLAS.Ti v22 software.

Results: FARS-ADL concepts most frequently reported by individuals with SCA were difficulty walking (n = 7/7), falls (n = 6/7), speech difficulties (n = 4/7), and swallowing (n = 3/7). Individuals with SCA reported that all FARS-ADL items were relevant; Gait and Walking (n = 7/7), Bladder Function (n = 6/7), and Falling (n = 6/7) were considered extremely relevant. All HCPs (n = 8/8) reported that most FARS-ADL items were relevant to individuals with SCA; Quality of Sitting Position was considered least relevant. HCPs reported meaningful change as 1-2 point score change in individual FARS-ADL items (n = 7/7), 1-3 point change in total score (n = 6/6), and stability on any item and/or total score over ≥ 1 year, depending on SCA subtype (n = 5/8). Cognitive debriefing supported clarity and comprehension of FARS-ADL. Suggested improvements included refining response options for Dressing, Falling, Walking, and Bladder Function items.

Conclusion: The findings confirm the content validity of most FARS-ADL items for use in individuals with mild-to-moderate SCA1 and SCA3, and offer suggested improvements for response options.

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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. 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