‘New to me’: changing patient understanding of psoriasis and identifying mechanisms of change. The Pso Well® patient materials mixed-methods feasibility study

Abstract

Background: Psoriasis is an inflammatory long-term condition involving comorbidities, unhealthy lifestyle and significant life impact. Patients’ understanding of psoriasis is limited and support lacking. The Common-Sense Model of Self-Regulation of Health and Illness emphasizes the role of illness and treatment beliefs on coping and self-management. New ‘Pso Well®’ patient materials informed by the model, addressed psoriasis as a long-term condition, medication management and lifestyle behaviours. Objectives: To investigate whether Pso Well® materials (i) broaden understanding of psoriasis without increasing anxiety; (ii) are acceptable; and (iii) comprise features that appear to effect change. Methods: The Revised Illness Perceptions Questionnaire (IPQ-R modified) and the Hospital Anxiety and Depression Scale (HADS) were administered in patients before and after intervention. Numerical rating scales assessed perceptions of change in understanding and anxiety resulting from engagement with the materials. Qualitative interviews explored acceptability and perceived ‘active ingredients’. Results: Fifty-five patients completed pre- and postintervention questionnaires (56% female; median age 59 years). Postintervention, a large effect size was indicated in two IPQ-R domains – illness coherence [t(55) = −3·48, P = 0·001 (two-tailed), η2 = 0·19] and personal control [t(55) = −2·98, P = 0·004 (two-tailed), η2 = 0·14] – and a medium effect in one, treatment control [t(55) = −2·08, P = 0·042 (two-tailed), η2 = 0·08]. HADS scores did not change. For numerical rating scales, 80% of participants reported increased understanding of psoriasis and none reported increased anxiety. Interviews with 19 patients indicated the materials were acceptable and usable. Factors reported to broaden understanding and promote engagement with self-management included linking of related disease aspects, personally relevant content and high-quality design. Conclusions: High-quality, theory-based psoriasis materials are acceptable to patients and can improve understanding and sense of control without increasing anxiety.