Documenting Patient Data in Psoriasis Clinical Practice—Patient Focus Groups Supporting Psoriasis Experts’ Decision-making

Abstract

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:

• psoriasis
• patient involvement
• focus groups
• documentation
• patient data

Acknowledgments

The authors would like to thank the participants of the study for their valuable contribution as well as the nursing and medical staff of the outpatient care unit involved in supporting recruitment of the study. We would also like to thank the following institutions for their valuable cooperation: German Society of Dermatology (DDG), Professional Association of German Dermatologists (BVDD), Regional Psoriasis Networks in Germany (PsoNet). The authors thank the Scientific Communication Team of the IVDP, in particular, Mathilda Meyer and Mario Gehoff, for copy editing.

Disclosure

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Additional information

Funding

The study was generally funded by Celgene, but the sponsor had no role in designing the study or analysis or interpretation of the data as well as the decision whether or not to submit its results.