Background and objectives: 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.
Patients and methods: 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.
Results: 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.
Conclusion: 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.
Keywords: documentation; focus groups; patient data; patient involvement; psoriasis.
© 2021 Otten and Augustin.