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实现银屑病管理中的幸福感:专家建议。

Implementing well-being in the management of psoriasis: An expert recommendation.

机构信息

Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.

Psoriasis-Center, Department of Dermatology, University Medical Center Schleswig-Holstein, Campus Kiel, Kiel, Germany.

出版信息

J Eur Acad Dermatol Venereol. 2024 Feb;38(2):302-310. doi: 10.1111/jdv.19567. Epub 2023 Oct 19.

Abstract

Psoriasis causes detriment in a person's physical, mental and social health which impairs their quality of life (QoL). However, the current psoriasis management may not adequately address all relevant health domains. Since the goal of healthcare is to restore or maintain health, health outcomes should include all areas of the patient's overall health. Life satisfaction, QoL and patient well-being are essential to a comprehensive approach to the disease. With the inclusion of more people-centred policies, care of patients with psoriasis should evolve towards a holistic and integrated assessment of the disease impact, including subjective measures of well-being in order to encompass all aspects of health. The main objective of this expert review is to give the concept of well-being a place as an entity within the holistic therapeutic approach for patients with psoriasis. Identifying and defining common goals beyond the skin with the patient and testing them throughout the course of treatment will benefit and enhance treatment success. We propose a series of recommendations for application in clinical practice, providing tangible clinical guidance for implementing well-being in the management of psoriasis. Among the recommendations are the need to initially listen to the patient, to know their level of empowerment or what they want to achieve, their preferences in decision making, the evaluation of not only the physical but also the emotional impact of the disease (well-being), the definition of the aspects that can generate a cumulative deterioration of the disease throughout life, and a continuous assessment of the patient's preferences with the opinion of the expert clinician and the integration of the knowledge of external clinical evidence.

摘要

银屑病会损害患者的身心健康和社会生活,降低其生活质量(QoL)。然而,目前的银屑病管理可能无法充分解决所有相关的健康领域。由于医疗保健的目标是恢复或维持健康,健康结果应包括患者整体健康的所有领域。生活满意度、生活质量和患者幸福感是综合疾病管理的关键。随着更多以人为本政策的纳入,银屑病患者的护理应该朝着对疾病影响的全面和综合评估发展,包括幸福感的主观衡量标准,以涵盖健康的所有方面。本专家综述的主要目的是将幸福感的概念作为银屑病整体治疗方法中的一个实体来体现。与患者一起确定和定义超越皮肤的共同目标,并在治疗过程中对其进行测试,将有利于提高治疗的成功率。我们提出了一系列建议,以应用于临床实践,为在银屑病管理中实施幸福感提供切实可行的临床指导。这些建议包括需要首先倾听患者的意见,了解他们的授权程度或他们想要实现的目标,了解他们在决策中的偏好,不仅要评估疾病的身体影响,还要评估其情绪影响(幸福感),定义可能导致疾病在整个生命周期中逐渐恶化的方面,并持续评估患者的偏好,同时征求专家临床医生的意见,并整合外部临床证据的知识。

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