Longitudinal Assessment of Quality of Life and Functionality by CAP-PRI in Patients With Active Chronic Inflammatory Demyelinating Polyradiculoneuropathy

IF 3 3区 医学 Q1 CLINICAL NEUROLOGY
Ivo Bozovic, Kelly Gwathmey, Stojan Peric, Aleksandra Kacar, Jelena Lazovic, Reza Sadjadi, Ivana Basta
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Abstract

Background and Aims

In most studies to date, generic health-related quality of life (QoL) questionnaires have been used in patients with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). Unfortunately, these tools are often considered insufficient for capturing the unique characteristics of this specific, rare disease. The Chronic Acquired Polyneuropathy Patient-Reported Index (CAP-PRI) is a measure which specifically targets patients with chronic immune-mediated polyneuropathies. This is the first study which longitudinally assessed QoL and functionality by CAP-PRI in patients with active CIDP.

Methods

CAP-PRI testing was conducted at three time points (baseline, year one and year four) in 57 CIDP patients with active disease at baseline. In addition, the Medical Research Council Sum Score (MRC-SS), Inflammatory Neuropathy Cause and Treatment (INCAT) disability score, Inflammatory Rasch-built Overall Disability Scale (I-RODS), and the generic QOL instrument, the Short Form 36 (SF-36) were used in all tested patients at all three time points.

Results

At the baseline and two other time points, CAP-PRI showed strong correlations with impairment (MRC-SS), functionality (INCAT, I-RODS), and the SF-36. At year one and year four, CAP-PRI was able to make a differentiation between patients whose impairment/disability improved compared to patients who deteriorated, and it performed better than SF-36. One- and four-year changes in CAP-PRI correlated with a change in MRC-SS, INCAT, and I-RODS.

Interpretation

CAP-PRI is a highly reliable and sensitive measure for assessing QoL in patients with active CIDP. Its consistent performance over time supports its utility in monitoring CIDP patients with active disease in clinical and research settings.

CAP-PRI对活动性慢性炎症性脱髓鞘性多根神经病变患者的生活质量和功能的纵向评估。
背景和目的:在迄今为止的大多数研究中,通用的健康相关生活质量(QoL)问卷调查已用于慢性炎症性脱髓鞘性多根神经病变(CIDP)患者。不幸的是,这些工具通常被认为不足以捕捉这种特殊的罕见疾病的独特特征。慢性获得性多神经病变患者报告指数(CAP-PRI)是一种专门针对慢性免疫介导的多神经病变患者的指标。这是第一个通过CAP-PRI对活动性CIDP患者的生活质量和功能进行纵向评估的研究。方法:在三个时间点(基线、第1年和第4年)对57例基线时疾病活动性的CIDP患者进行CAP-PRI测试。此外,医学研究委员会总评分(MRC-SS)、炎症性神经病变病因和治疗(INCAT)残疾评分、炎症性rasch构建的整体残疾量表(I-RODS)和通用的生活质量量表短表36 (SF-36)在所有三个时间点被用于所有被测试的患者。结果:在基线和其他两个时间点,CAP-PRI显示与损伤(MRC-SS)、功能(INCAT, I-RODS)和SF-36有很强的相关性。在第一年和第四年,CAP-PRI能够区分损伤/残疾改善的患者与恶化的患者,并且它比SF-36表现更好。1年和4年CAP-PRI的变化与MRC-SS、INCAT和i - rod的变化相关。CAP-PRI是一种高度可靠和敏感的评估活动性CIDP患者生活质量的方法。随着时间的推移,它的一贯表现支持了它在临床和研究环境中监测患有活动性疾病的CIDP患者的效用。
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来源期刊
CiteScore
6.10
自引率
7.90%
发文量
45
审稿时长
>12 weeks
期刊介绍: The Journal of the Peripheral Nervous System is the official journal of the Peripheral Nerve Society. Founded in 1996, it is the scientific journal of choice for clinicians, clinical scientists and basic neuroscientists interested in all aspects of biology and clinical research of peripheral nervous system disorders. The Journal of the Peripheral Nervous System is a peer-reviewed journal that publishes high quality articles on cell and molecular biology, genomics, neuropathic pain, clinical research, trials, and unique case reports on inherited and acquired peripheral neuropathies. Original articles are organized according to the topic in one of four specific areas: Mechanisms of Disease, Genetics, Clinical Research, and Clinical Trials. The journal also publishes regular review papers on hot topics and Special Issues on basic, clinical, or assembled research in the field of peripheral nervous system disorders. Authors interested in contributing a review-type article or a Special Issue should contact the Editorial Office to discuss the scope of the proposed article with the Editor-in-Chief.
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