Otten Marina, 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), Hamburg, Germany.
Patient Prefer Adherence. 2021 Mar 8;15:549-557. doi: 10.2147/PPA.S297569. eCollection 2021.
This article presents patients' attitudes about documenting patient data and outcome measures in psoriasis clinical practice to support a Delphi approach of psoriasis experts to develop a standard data set.
We conducted three focus groups with 14 patients in a German outpatient unit for psoriasis. The focus was to explore reasons for and against the documentation of single variables concerning personal, anamnesis, clinical, patient-reported outcomes, and other data.
The patients mainly discussed if a variable has an impact on the disease or treatment decision, or if there might be a practical value from experiences with treatments when documented. In addition, in their point of view, patient-reported outcome data are important to document as it enables physicians to learn about a patient's subjective burden of disease. Patient education and the involvement of other physicians in the treatment process also emerged as relevant aspects.
The results help to understand patients' preferences on documenting patient data and their idea of an exhaustive doctor-patient consultation to improve doctor-patient communication, disease monitoring, and quality of care.
本文介绍了患者对银屑病临床实践中记录患者数据和结局指标的态度，以支持银屑病专家采用德尔菲法制定标准数据集。
我们在德国一家银屑病门诊单位对14名患者进行了三组焦点小组访谈。重点是探讨支持和反对记录个人、既往史、临床、患者报告结局及其他数据等单一变量的原因。
患者主要讨论了某个变量是否对疾病或治疗决策有影响，或者记录下来的治疗经验是否可能具有实际价值。此外，在他们看来，记录患者报告的结局数据很重要，因为这能让医生了解患者的主观疾病负担。患者教育以及其他医生参与治疗过程也被视为相关方面。
这些结果有助于理解患者在记录患者数据方面的偏好，以及他们对详尽医患咨询的看法，从而改善医患沟通、疾病监测和医疗质量。
