Department of Dermatology, University Medical Centre Mannheim, Heidelberg University, Theodor-Kutzer-Ufer 1-3, 68135, Mannheim, Germany.
Department of Dermatology, Vivantes Klinikum im Friedrichshain, Berlin, Germany.
BMC Public Health. 2019 Nov 19;19(1):1535. doi: 10.1186/s12889-019-7778-x.
Psoriasis is a chronic inflammatory skin disease associated with a reduced life-quality. Severe disease forms put the patients at risk for life-treating cardiovascular events, metabolic, and other immune-mediated disorders. Psoriasis patients are often not sufficiently informed about their condition leading to suboptimal treatment adherence and, consequently, worse patient outcome. We investigated the value of an educational program on knowledge and self-expertise about the disease in psoriasis patients in general and dependent on age and disease duration.
Regular visit psoriasis-patients were asked to participate and choose to receive an additional educational program or not. Participating patients (n = 53) filled out two questionnaires: one at study inclusion and one at the next regular visit or after the absolved educational program. Surveys included disease knowledge assessment and numeric rating scales (0-10) for self-expertise about the disease, therapy adherence, and therapy satisfaction. The Dermatology Life Quality Index (DLQI) was used to investigate the quality of life. All continuous parameters were examined for statistically significant differences by paired t-test or unpaired t-test. Continuous parameters without Gaussian distribution were analyzed with the Wilcoxon matched pairs test or the Mann-Whitney test. For all categorical parameters, Fisher's exact test was used.
Patients who chose to be educated (n = 24) showed a significant increase in knowledge, self-expertise about the disease and amelioration of general health. No positive short-term effects were seen on the quality of life and therapy adherence. Analyzing the effect of age and disease duration, the educational program led to significant improvement of the emotional well-being in older patients (≥50 years) and with a longer disease duration as well as significant amelioration of the self-expertise about psoriasis in younger patients (< 50 years).
Patients who chose to participate in an educational program show a higher gain in knowledge and self-expertise about the psoriatic disease. Educational program thus might have a positive effect on the long-term management of psoriasis. Further long-term studies are needed to provide evidence for the influence educational programs have on outcome, quality of life, and treatment adherence of psoriatic patients.
Deutsches Register Klinischer Studien DRKS00017318 (09.10.2019), retrospectively registered.
银屑病是一种慢性炎症性皮肤病,会降低生活质量。严重的疾病形式使患者面临治疗生命的心血管事件、代谢和其他免疫介导的疾病的风险。银屑病患者通常对自己的病情了解不足,导致治疗依从性不理想,进而导致患者预后更差。我们研究了在一般银屑病患者中,以及根据年龄和疾病持续时间,提供疾病知识和自我专业知识教育计划的价值。
定期就诊的银屑病患者被要求参与并选择是否接受额外的教育计划。参与的患者(n=53)填写了两份问卷:一份在研究纳入时,一份在下次定期就诊时或完成教育计划后。调查包括疾病知识评估和疾病自我专业知识的数字评分量表(0-10)、治疗依从性和治疗满意度。使用皮肤病生活质量指数(DLQI)来评估生活质量。通过配对 t 检验或独立 t 检验对所有连续参数进行统计学显著性差异检验。非正态分布的连续参数采用 Wilcoxon 配对检验或 Mann-Whitney 检验进行分析。对于所有分类参数,使用 Fisher 确切检验。
选择接受教育的患者(n=24)表现出知识、疾病自我专业知识和整体健康状况的显著增加。在生活质量和治疗依从性方面没有看到短期的积极影响。分析年龄和疾病持续时间的影响,教育计划导致年龄较大(≥50 岁)和疾病持续时间较长的患者的情绪健康状况显著改善,以及年龄较小(<50 岁)的患者对银屑病的自我专业知识显著改善。
选择参加教育计划的患者在疾病知识和自我专业知识方面的获益更高。因此,教育计划可能对银屑病的长期管理产生积极影响。需要进一步的长期研究来提供教育计划对银屑病患者结局、生活质量和治疗依从性的影响的证据。
德国临床研究注册中心 DRKS00017318(2019 年 10 月 9 日),回溯注册。