患者报告结果的重要性:呼吁将其纳入多发性硬化症患者的常规护理。

IF 5
Samantha Cruz Rivera, Stephanie Buxhoeveden, Olalekan Lee Aiyegbusi, Nina Bozinov, Paul Kamudoni, Robert McBurney, Melanie Calvert
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引用次数: 0

摘要

多发性硬化症(MS)是一种中枢神经系统慢性炎症性疾病。常见症状包括身体残疾、认知障碍、痉挛、疲劳、肠/膀胱功能障碍和抑郁。使用患者报告结局(pro)可用于系统地评估疾病负担及其对治疗和健康相关生活质量的影响。对MS患者常规护理中的PROs进行评估,为该疾病的多方面影响提供了独特的个人见解,同时避免了家长式医疗方法的延续,这种方法赋予了客观医疗测量的特权。本综述从患者和临床医生的角度强调了将PRO整合到MS常规护理中的潜在益处,描述了与PRO数据收集及其在常规设置中的使用相关的挑战。将PRO纳入日常护理的挑战包括(1)PRO措施的选择;(2)提供者和技术工作流程;(3)公平性、多样性和包容性挑战。此外,本综述还提供了解决方案和建议,以促进PROs在MS护理中的整合。在MS常规护理中采用pro对于提高MS个体的护理质量和提供以患者为中心的护理至关重要,这可以提高治疗依从性和患者预后。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The importance of patient-reported outcomes: A call for their integration in the routine care of patients with multiple sclerosis.

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. Common symptoms include physical disability, cognitive impairment, spasticity, fatigue, bowel/bladder dysfunction and depression. The use of patient-reported outcomes (PROs) can be used to systematically assess the burden of the disease and its impact on treatment and health-related quality of life. Assessment of PROs in routine care of people with MS provides a unique and personal insight into the multifaceted impact of the disease, while avoiding perpetuating the paternalistic medical approach that privileges objective medical measurement.This review highlights the potential benefits of integrating PROs in MS routine care from the patient and clinician perspective, describes challenges associated with PRO data collection and their use in routine settings. Challenges in the integration of PROs into routine care include (1) selection of PRO measures, (2) provider and technical workflow and (3) equity, diversity and inclusivity challenges. In addition, the review provides solutions and recommendations to facilitate the integration of PROs in MS care. The adoption of PROs in MS routine care is essential to improve MS individuals' quality of care and deliver patient-centred care, which can lead to increased treatment adherence and patient outcomes.

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