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治疗满意度、生活质量和自我评估疾病严重程度是否为患者登记处的相关参数?来自芬兰和瑞典银屑病患者的经验。

Are treatment satisfaction, quality of life, and self-assessed disease severity relevant parameters for patient registries? Experiences from Finnish and Swedish patients with psoriasis.

机构信息

IHE, The Swedish Institute for Health Economics, Lund, Sweden.

出版信息

Acta Derm Venereol. 2011 Jun;91(4):409-14. doi: 10.2340/00015555-1094.

Abstract

Patient registries often lack indicators of the disease as experienced by patients, e.g. treatment satisfaction and self-assessed disease severity. There is scarce information about the relationship between these assessments and currently existing instruments used in treatment evaluation. Our objective was to explore the importance of these indicators among patients with psoriasis in Finland and Sweden, in relation to treatment patterns and current measures of health-related quality of life. Data were collected from a patient survey and a retrospective chart review for 273 patients over 12 months. To assess psoriasis treatment completely, it is necessary to consider the impact of the disease on the patient in terms of treatment satisfaction, disease severity and health-related quality of life. The individual disease burden on patients should play a central role in formulating treatment goals. Clinician- and patient-based perspectives of the overall impact of psoriasis can assist clinical decision-making and evaluations of treatments.

摘要

患者登记处通常缺乏患者所经历的疾病指标,例如治疗满意度和自我评估的疾病严重程度。关于这些评估与当前用于治疗评估的工具之间的关系的信息很少。我们的目的是在芬兰和瑞典的银屑病患者中探讨这些指标的重要性,以及它们与治疗模式和当前健康相关生活质量措施之间的关系。数据来自对 273 名患者进行的患者调查和回顾性图表审查,时间为 12 个月。为了全面评估银屑病的治疗效果,有必要从治疗满意度、疾病严重程度和健康相关生活质量方面考虑疾病对患者的影响。患者的个体疾病负担应在制定治疗目标中发挥核心作用。基于临床医生和患者的银屑病整体影响的观点可以辅助临床决策和治疗评估。

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