H. Young’s research while affiliated with University of Manchester and other places

Psoriasis is an immune‐mediated inflammatory skin disease, with a prevalence of 0·09% to 11·4%, which affects approximately two million people in the U.K.1,2 It has a significant psychological and social impact on affected individuals, is associated with co‐morbidities such as depression, cardiovascular disease and inflammatory arthritis, and confers a substantial economic burden on the National Health Service.1‐3 Access to appropriate care that addresses the high health‐care burden and complex interlinked physical, psychological and social needs of those who have psoriasis is often poor. This article is protected by copyright. All rights reserved.

Background: Psoriasis affects over two million people in the UK. It confers a significant psychological and social impact on individuals and an associated high economic cost to the National Health Service. There are many unanswered questions about psoriasis. Objectives: 1. To develop a protocol in order to work with patients, families, carers and healthcare professionals to identify psoriasis uncertainties. 2. To agree by consensus a top ten list of psoriasis uncertainties. 3. To disseminate prioritised unanswered questions to researchers and funders to promote work focused on answering the uncertainties considered most important by stakeholders. Methods: A Psoriasis Priority Setting Partnership has been established to gather psoriasis uncertainties following the transparent methodology advocated by the James Lind Alliance. A Steering Group composed of stakeholders will disseminate a survey to patients, families, carers and healthcare professionals to collect information on important psoriasis questions. After removing duplications, uncertainties will be collated and checked against existing evidence to determine whether any have already been resolved. 'True uncertainties' will be circulated to stakeholders in a second survey where they will be ranked by importance. At a final workshop, information will be distilled to generate a top ten list of uncertainties. Results: By following the protocol outlined in this paper a prioritised list of uncertainties will be identified which will be inform the psoriasis research agenda. Conclusions: Research, targeted to address priorities identified by a range of stakeholders is imperative. This project will inform policymakers and research funding bodies of what really matters to these groups. This article is protected by copyright. All rights reserved.

Table S1. Consultation process for Pso Well® patient materials development and refinement.

Table S2. Interview topic guide.

Table S3. Domain scores of the Revised Illness Perceptions Questionnaire from individuals who completed the pre‐ and postintervention measures.

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.

As a long-term condition, psoriasis demands significant personal and professional input for optimal self-management. Low levels of well-being and high levels of psychological distress are associated with psoriasis and reduced resources for self-care. Patient-reported outcome (PRO) measures can assess physical, social, and psychological functioning in order to guide treatment decision-making. Many psoriasis PRO measures exist; we systematically reviewed their development and validation to determine appropriateness for use in clinical management. PubMed (Medline), PsycInfo, and Cinhal from inception were systematically searched using pre-defined search terms and limited to English language and human subjects. Articles were selected for full review through explicit inclusion/exclusion criteria. PRO measures were critically reviewed in accordance with published guidelines and theory on the development and validation of PROs. The search identified 967 abstracts; 71 met criteria for full review. 45 PRO measures were found, 16 specific to psoriasis, 21 assessed other dermatological conditions, and 8 were developed for generic non-dermatological health conditions. The review revealed limitations of existing measures including: a) composite structure assessing multiple, poorly defined concepts; b) lack of evidence for face and content validity; d) failure to include both patient and clinician perspectives and requirements; and d) lack of evidence of the feasibility and acceptability for patients and physicians. No single PRO measure with adequate evidence of validity, reliability, and sensitivity to change captures patient wellbeing in psoriasis. A valid, sensitive, specific, and acceptable PRO to assess the full impact of psoriasis on wellbeing is needed for the comprehensive clinical management of psoriasis. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.