促进风湿性疾病患者的赋权:国际behet协会疾病工作组关于患者赋权、坚持治疗和患者教育的观点。

IF 3.4 4区 医学 Q2 RHEUMATOLOGY
Federica Di Cianni, Diana Marinello, Andreas Altenburg, Umit Karacayli, Giacomo Emmi, Michael Schirmer, Gonca Mumcu, Farida Fortune, Rosaria Talarico
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引用次数: 0

摘要

behet病(BD)是一种罕见的多系统血管炎,严重影响患者的生活质量。BD的有效管理需要一种以患者为中心的方法,使个人能够积极参与他们的护理。本研究探讨了双相障碍患者赋权、治疗依从性和患者教育的重要性。双相障碍对生活质量(QOL)的影响是显著的,影响身体和心理健康。生活质量测量对于从患者的角度了解疾病的全部负担至关重要,有助于指导可改善疾病管理的干预措施。此外,由于各种因素,包括药物复杂性、对副作用的恐惧以及患者对其健康状况的认知,治疗依从性仍然是一个主要挑战。赋权战略,包括教育和情感支持,对于提高依从性和降低医疗成本至关重要。增强双相障碍患者的能力包括促进医疗保健提供者和患者之间的协作关系,促进共同决策,提高患者管理其病情的知识和技能。通过向患者提供有关疾病、治疗方案和自我管理策略的准确信息,患者教育在增强患者权能方面发挥着至关重要的作用。国际behet病协会患者赋权、治疗依从性和患者教育工作组旨在通过制定全球战略来增强双相障碍患者、护理人员和医疗保健提供者的权能,从而解决这些问题。这一举措促进了整个BD社区的合作,最终为患者带来更好的治疗效果,并为其他疾病领域的类似努力树立了榜样。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Promoting patients' empowerment in rheumatic diseases: the perspective of the International Society of Behçet's Disease Working Group on Patient Empowerment, Adherence to Therapy and Patients' Education.

Behçet's disease (BD) is a rare multisystemic vasculitis that significantly impacts patients' quality of life. Effective management of BD requires a patient-centred approach that empowers individuals to actively participate in their care. This work explores the importance of patient empowerment, adherence to treatment, and patient education in BD. The impact of BD on quality of life (QOL) is significant, affecting both physical and psychological well-being. QOL measures are essential in capturing the full burden of the disease from the patient's perspective, helping guide interventions that can improve disease management. Moreover, treatment adherence remains a major challenge due to various factors, including medication complexity, fear of side effects, and patient perceptions of their health status. Empowerment strategies, including education and emotional support, are crucial to improving adherence and reducing healthcare costs. Empowering BD patients involves fostering a collaborative relationship between healthcare providers and patients, promoting shared decision-making and enhancing patients' knowledge and skills to manage their condition. Patient education plays a crucial role in empowering patients by providing them with accurate information about the disease, treatment options, and self-management strategies. The International Society for Behçet's Disease Working Group on Patient Empowerment, Adherence to Therapy, and Patient Education aims to address these issues by developing global strategies to empower BD patients, caregivers and healthcare providers. This initiative promotes collaboration across the BD community, ultimately leading to better patient outcomes and serving as a model for similar efforts in other disease areas.

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来源期刊
CiteScore
6.10
自引率
18.90%
发文量
377
审稿时长
3-6 weeks
期刊介绍: Clinical and Experimental Rheumatology is a bi-monthly international peer-reviewed journal which has been covering all clinical, experimental and translational aspects of musculoskeletal, arthritic and connective tissue diseases since 1983.
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