α -1抗胰蛋白酶缺乏症患者:授权患者和医疗保健专业人员

H. Boreham
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引用次数: 0

摘要

慢性阻塞性肺疾病(COPD)的恶化造成了巨大的医疗负担,是负面临床结果和患者生活质量降低的关键驱动因素。Stockley教授强调了α -1抗胰蛋白酶缺乏症(AATD)和非AATD相关COPD在恶化方面的主要差异,并考虑了对患者管理的潜在影响。已知早期治疗化脓性痰加重可改善患者预后。来自临床研究的新证据也表明,α -1抗胰蛋白酶(AAT)治疗可以对AATD恶化的性质和过程产生积极影响。Zanichelli博士概述了自我静脉给药是如何被精心挑选的AATD患者成功使用的。静脉给药是患者在其他适应症中安全实施的常规程序。自我给药可以使患者在自己的疾病管理中发挥越来越积极的作用,从而提高治疗满意度、疾病控制、临床结果和生活质量,这反映了当前AATD治疗方法更加个性化的趋势。Karen skamatlvoll提供了一个独特的病人对AAT自我给药的观点,她强调了自我输液提供的主要好处,比如减少局部创伤,增加旅行和享受生活的自由。凯伦多次环球旅行的照片表明,作为AATD患者,自我管理给了她无与伦比的自由。从医生的角度来看,桑德豪斯教授总结了他的经验,即如何让患者在最少的培训下独立自主地进行AAT治疗。在积极的个体中,自我给药可以为他们的AATD提供一个成功的长期治疗方案。对自我治疗的推动也带来了双重好处,减轻了医疗负担,增强了患者的便利性和灵活性。Koczulla教授报告说,总体而言,现有证据表明肺康复是AATD的一种成功策略,可以显着提高患者的身体表现。尽管最有效的训练算法仍需要前瞻性的验证,但这种方法可能对焦虑、呼吸困难和害怕体育活动的患者特别有利。为了获得最大的效益,治疗和目标的肺康复必须始终量身定制的个人病人在个性化的方法来护理。会议以引人注目的“AATD强人比赛”结束,科齐拉教授与AATD患者凯伦·斯克拉尔沃尔在耐力(所谓的“农民步行”,包括搬运沉重的障碍物)和力量(举哑铃)方面进行体能测试。尽管预期的有氧能力受损,但Karen在力量测试中的优势清楚地表明,AATD患者可以通过体育训练获得身体上的收益。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Living with Alpha-1 Antitrypsin Deficiency: Empowering Patients and Healthcare Professionals
Exacerbations in chronic obstructive pulmonary disease (COPD) impose a substantial healthcare burden and are key drivers of negative clinical outcomes and reduced patient quality of life. Prof Stockley highlighted the main differences in exacerbations between alpha-1 antitrypsin deficiency (AATD) and non-AATD-related COPD and considered potential implications for patient management. Early treatment of exacerbations with purulent sputum is known to be associated with improved patient outcomes. Emerging evidence from clinical studies also suggests that alpha-1 antitrypsin (AAT) therapy can have a positive impact on the nature and course of exacerbations in AATD. Dr Zanichelli outlined how self-administration of intravenous drugs, which is a routine procedure that patients safely implement in other indications, has the potential to be successfully used by carefully selected AATD patients. Reflecting the current trend towards a more personalised approach to AATD therapy, self-administration can empower patients to assume an increasingly active role in their own disease management, thereby bringing improvements in treatment satisfaction, disease control, clinical outcomes, and quality of life. A unique patient’s perspective on AAT self-administration was provided by Karen Skålvoll, who highlighted the key benefits offered by self-infusion, such as reduced localised trauma and increased freedom to travel and enjoy life. Photographs from Karen’s many global travels illustrate the unparalleled freedom that self-administration has afforded her as an AATD patient. From the physician’s standpoint, Prof Sandhaus summarised his experience of how patients can be empowered to self-administer AAT therapy independently with minimal training. Among motivated individuals, self-administration can provide a successful long-term treatment solution for their AATD. The drive towards self-treatment also delivers the dual benefits of reduced healthcare burden and enhanced convenience and flexibility for patients. Prof Koczulla reported that, overall, the available evidence indicates pulmonary rehabilitation as a successful strategy in AATD, which can significantly enhance a patients’ physical performance. Although the most effective training algorithm still needs to be prospectively validated, this approach may prove particularly advantageous in patients with anxiety, dyspnoea, and fear of physical activity. In order to achieve maximum benefit, therapy and goals of pulmonary rehabilitation must always be tailored to the individual patient in a personalised approach to care. The meeting concluded with the compelling ‘AATD Strongman Contest,’ which pitted Prof Koczulla against AATD patient Karen Skålvoll in a physical test of endurance (the so called ‘farmer’s walk’ involving carrying a heavy obstacle) and strength (dumbbell raises). Notwithstanding the expected impairment in aerobic ability, the domination of Karen in the strength test clearly demonstrates the physical gains that patients with AATD can achieve with physical training.
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