van Cranenburgh Oda D, Smets Ellen M A, de Rie Menno A, Sprangers Mirjam A G, de Korte John
Department of Dermatology, Academic Medical Centre, University of Amsterdam, 1105 AZ Amsterdam, The Netherlands.
Acta Derm Venereol. 2015 Jan;95(1):51-6. doi: 10.2340/00015555-1872.
Chronic skin diseases have a negative impact on patients' health-related quality of life (HRQoL). Patient education might contribute to HRQoL improvement. We developed a web-based, educational, HRQoL intervention for patients with a chronic skin disease. We aimed to assess 1) the feasibility of implementing the intervention in routine dermatological practice and patients' daily life, and 2) the acceptance of the intervention by health care providers and patients. Additionally, we aimed to create a patient user profile. We conducted an observational pilot study at 6 dermatological centres, including 105 outpatients. Implementation in routine practice was feasible and acceptable to health care providers. However, implementation in patients' daily life was found not to be entirely feasible. Perceived relevance by patients was low, though patients rated the intervention as convenient and attractive. No univocal user profile was found. Suggestions for improvements of the intervention, e.g. tailoring and adding blended learning components, are discussed.
慢性皮肤病会对患者的健康相关生活质量(HRQoL)产生负面影响。患者教育可能有助于改善健康相关生活质量。我们为慢性皮肤病患者开发了一种基于网络的、具有教育性质的健康相关生活质量干预措施。我们旨在评估:1)在常规皮肤科实践和患者日常生活中实施该干预措施的可行性,以及2)医疗服务提供者和患者对该干预措施的接受程度。此外,我们旨在创建一个患者用户档案。我们在6个皮肤科中心进行了一项观察性试点研究,纳入了105名门诊患者。在常规实践中实施该干预措施对医疗服务提供者来说是可行且可接受的。然而,发现在患者日常生活中实施并非完全可行。尽管患者认为该干预措施方便且有吸引力,但患者感知到的相关性较低。未发现明确的用户档案。文中讨论了对该干预措施进行改进的建议,例如进行量身定制并增加混合学习组件。