Patient Preference and Adherence (Mar 2021)
Documenting Patient Data in Psoriasis Clinical Practice—Patient Focus Groups Supporting Psoriasis Experts’ Decision-making
Abstract
Marina Otten, Matthias Augustin 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, GermanyCorrespondence: Marina OttenGerman 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, Hamburg, 20246, GermanyTel +49 40 7410 55428Fax +49 40 7410 55348Email [email protected] 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: psoriasis, patient involvement, focus groups, documentation, patient data