推进嗜睡症宣传:连接患者叙述和系统改变。

IF 3.4 2区 医学 Q2 CLINICAL NEUROLOGY
Nature and Science of Sleep Pub Date : 2025-06-23 eCollection Date: 2025-01-01 DOI:10.2147/NSS.S537298
Ahmed Salem BaHammam, Lindsay Jesteadt, Hamza Dhafar, Amir Sharafkhaneh
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引用次数: 0

摘要

我们介绍了“从耻辱到结构倡导框架”,这是一个新颖的、基于证据的模型,旨在通过系统地将患者叙述与结构变化联系起来,从而改变嗜睡症的倡导。发作性睡病仍然是一种严重未被诊断和误解的神经系统疾病,持续的诊断延迟和普遍的文化耻辱感损害了患者的福祉和获得护理的机会。尽管最近在提高认识和支持方面取得了进展,但宣传工作仍然是零散的,没有充分纳入卫生政策,特别是在低收入和中等收入国家。这一观点通过“从污名到结构”倡导框架推动了嗜睡症倡导的战略演变,该框架以三个支柱为基础:叙事驱动的意识、临床系统整合和政策激活。根据最近的证据、患者证词和全球案例研究,我们确定了当前倡导模式中的关键差距,例如青年和边缘人群的代表性有限,对文化背景的适应不足,以及缺乏标准化的影响指标。例如,持续的诊断延误和根深蒂固的文化耻辱感继续阻碍许多人得到及时护理和融入社会。我们概述了未来十年的五项优先行动:制定成果指标,建立文化响应倡导中心,将发作性睡病纳入罕见疾病登记,扩大同伴指导网络,改革政策框架。通过以公平、数字包容和跨部门合作为中心,该框架旨在消除根深蒂固的障碍,促进对所有嗜睡症患者的及时诊断、有效护理和社会包容。最后,我们呼吁全球协调一致,以患者为动力的运动,将倡导重新定义为睡眠医学结构转型的驱动力。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.

Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.

Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.

Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.

We introduce the Stigma-to-Structure Advocacy Framework, a novel, evidence-based model designed to transform narcolepsy advocacy by systematically bridging patient narratives with structural change. Narcolepsy remains a profoundly underdiagnosed and misunderstood neurological disorder, with persistent diagnostic delays and pervasive cultural stigma undermining patient well-being and access to care. Despite recent progress in awareness and support, advocacy efforts remain fragmented and insufficiently integrated with health policy, particularly in low- and middle-income countries. This perspective advances a strategic evolution of narcolepsy advocacy through the Stigma-to-Structure Advocacy Framework, which is anchored in three pillars: narrative-driven awareness, clinical system integration, and policy activation. Drawing on recent evidence, patient testimonies, and global case studies, we identify critical gaps in current advocacy models, such as limited representation of youth and marginalized populations, insufficient adaptation to cultural contexts, and the absence of standardized impact metrics. For example, ongoing diagnostic delays and entrenched cultural stigma continue to impede timely care and social inclusion for many individuals. We outline five priority actions for the next decade: developing outcome metrics, building culturally responsive advocacy hubs, integrating narcolepsy into rare disease registries, expanding peer mentoring networks, and reforming policy frameworks. By centering equity, digital inclusion, and cross-sector collaboration, this framework aims to dismantle entrenched barriers and promote timely diagnosis, effective care, and social inclusion for all individuals with narcolepsy. We conclude by calling for a globally coordinated, patient-powered movement that redefines advocacy as a driver of structural transformation in sleep medicine.

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来源期刊
Nature and Science of Sleep
Nature and Science of Sleep Neuroscience-Behavioral Neuroscience
CiteScore
5.70
自引率
5.90%
发文量
245
审稿时长
16 weeks
期刊介绍: Nature and Science of Sleep is an international, peer-reviewed, open access journal covering all aspects of sleep science and sleep medicine, including the neurophysiology and functions of sleep, the genetics of sleep, sleep and society, biological rhythms, dreaming, sleep disorders and therapy, and strategies to optimize healthy sleep. Specific topics covered in the journal include: The functions of sleep in humans and other animals Physiological and neurophysiological changes with sleep The genetics of sleep and sleep differences The neurotransmitters, receptors and pathways involved in controlling both sleep and wakefulness Behavioral and pharmacological interventions aimed at improving sleep, and improving wakefulness Sleep changes with development and with age Sleep and reproduction (e.g., changes across the menstrual cycle, with pregnancy and menopause) The science and nature of dreams Sleep disorders Impact of sleep and sleep disorders on health, daytime function and quality of life Sleep problems secondary to clinical disorders Interaction of society with sleep (e.g., consequences of shift work, occupational health, public health) The microbiome and sleep Chronotherapy Impact of circadian rhythms on sleep, physiology, cognition and health Mechanisms controlling circadian rhythms, centrally and peripherally Impact of circadian rhythm disruptions (including night shift work, jet lag and social jet lag) on sleep, physiology, cognition and health Behavioral and pharmacological interventions aimed at reducing adverse effects of circadian-related sleep disruption Assessment of technologies and biomarkers for measuring sleep and/or circadian rhythms Epigenetic markers of sleep or circadian disruption.
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