Blome Christine, Gosau Ramona, Radtke Marc A, Reich Kristian, Rustenbach Stephan J, Spehr Christina, Thaçi Diamant, Augustin Matthias
German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, 20246, Hamburg, Germany.
Dermatologikum Hamburg, Hamburg, Germany.
Arch Dermatol Res. 2016 Mar;308(2):69-78. doi: 10.1007/s00403-015-1613-8. Epub 2015 Dec 19.
Patient-oriented care requires therapeutic decisions to agree with the patients' treatment needs and goals. This study addressed the following questions: What is important to psoriasis patients starting systemic treatment? How stable are these preferences within the first year of treatment? Are treatment goals associated with age, gender, or treatment success? The importance of treatment goals was assessed for patients with moderate-to-severe psoriasis in the German Psoriasis Registry (PsoBest) at baseline (onset of a systemic treatment; n = 3066) and at a 1-year follow-up (n = 1444) using the Patient Benefit Index (PBI). Treatment success was measured with PBI global score and Psoriasis Area Severity Index (PASI). Patients with moderate-to-severe psoriasis pursued a wide range of different goals. The most general treatment goals were rated most relevant, including skin healing and quick skin improvement (94.8/94.5 % "quite" or "very" important), confidence in the therapy (93.0 %), control over the disease (92.3 %), and a clear diagnosis and therapy (89.6 %). Further important goals related to not being in fear of the disease getting worse (84.8 %), reduction in itching (83.9 %), burning (70.6 %), and pain (60.6 %) as well as attaining a normal everyday life (78.4 %) and low treatment burden (64.2-77.9 %). Goals were mostly not associated with sex and gender. Goal importance slightly increased with treatment success. In a substantial proportion of patients (30.3-54.7 %) goal importance changed within 1 year after onset of systemic treatment. We conclude that treatment goal importance should be assessed in clinical practice on a regular basis.
以患者为导向的护理要求治疗决策符合患者的治疗需求和目标。本研究解决了以下问题:对于开始进行系统治疗的银屑病患者来说,什么是重要的?在治疗的第一年,这些偏好的稳定性如何?治疗目标是否与年龄、性别或治疗成功相关?使用患者受益指数(PBI),在基线(系统治疗开始时;n = 3066)和1年随访时(n = 1444),对德国银屑病登记处(PsoBest)中中度至重度银屑病患者的治疗目标重要性进行了评估。治疗成功程度用PBI全球评分和银屑病面积和严重程度指数(PASI)来衡量。中度至重度银屑病患者追求广泛的不同目标。最普遍的治疗目标被评为最相关,包括皮肤愈合和皮肤快速改善(94.8/94.5%“相当”或“非常”重要)、对治疗的信心(93.0%)、对疾病的控制(92.3%)以及明确的诊断和治疗(89.6%)。其他重要目标包括不担心疾病恶化(84.8%)、瘙痒减轻(83.9%)、烧灼感减轻(70.6%)、疼痛减轻(60.6%)以及获得正常的日常生活(78.4%)和低治疗负担(64.2 - 77.9%)。目标大多与性别无关。目标重要性随治疗成功程度略有增加。在相当一部分患者(30.3 - 54.7%)中,目标重要性在系统治疗开始后的1年内发生了变化。我们得出结论,在临床实践中应定期评估治疗目标的重要性。