Defining value for patients with psoriasis : development of a patient-driven outcome set for clinical practice

To date, there is no outcome set, a consensus-driven minimum set of outcomes, available for psoriasis from a patients’ perspective. Psoriasis is a common chronic inflammatory skin disease with a worldwide prevalence of 0.1–11%. Patients can have symptoms varying from pruritus to burning sensations to bleeding to scaling to pain. Skin lesions can also be disfiguring, depending on their size and location. Psoriasis therefore significantly impacts on patients’ quality of life. As this disease has such a high impact, it is essential that the patient’s voice is incorporated into its management. The purpose of this study was to develop an outcome set for daily clinical practice,which was solely defined by patients with psoriasis. Firstly, a systematic review was conducted, providing an overview of all patient-relevant outcomes defined in the current literature.These outcomes were presented to 10 patients, using a nominal group technique, to examine whether these results represented all of their relevant outcomes. Secondly, these outcomes were ranked by 120 patients attending our psoriasis clinic. Patients were asked to rank cards, containing the outcomes and a brief explanation of that particular outcome, in order of their perceived importance. Finally, a literature review was performed to assess which instruments are available to evaluate the outcomes in our outcome set. The systematic review resulted in 23 patient-relevant outcomes. After the nominal group meeting, two outcomes were excluded from the ranking exercise as they were deemed to be inappropriate.The outcomes found to be most important by patients with psoriasis were symptom control, treatment efficacy, and confidence in care and control of disease. The least important outcomes were comorbidity control, productivity and cost of care. Based on this ranking exercise an outcome set was defined. The review provided us with instruments for each outcome. In conclusion, we defined the first patient-driven outcome set that enables us to evaluate value for patients when managing psoriasis in clinical practice. This set defines treatment success, based on what is truly important to the patient. In addition, it may also serve as a benchmarking tool to critically appraise and improve the care delivered across centres and among individual healthcare providers