Department of Dermatology, The University of Manchester, Manchester Academic Health Science Centre, Manchester, U.K.
Centre of Evidence Based Dermatology, University of Nottingham, King's Meadow Campus, Nottingham, U.K.
Br J Dermatol. 2018 Jun;178(6):1383-1387. doi: 10.1111/bjd.15992. Epub 2018 Mar 31.
Psoriasis affects over two million people in the U.K. It has a significant psychological and social impact on individuals and an associated high economic cost to the U.K. National Health Service. There are many unanswered questions about psoriasis.
To develop a protocol in order to work with patients, families, carers and healthcare professionals to identify psoriasis uncertainties; to agree by consensus a top-10 list of psoriasis uncertainties; and to disseminate prioritized unanswered questions to researchers and funders so as to promote work that will focus on answering the uncertainties considered most important by stakeholders.
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 has disseminated an initial 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-10 list of uncertainties.
By following the protocol outlined in this paper a prioritized list of uncertainties will be identified that will be used to inform the psoriasis research agenda.
Research targeted to address priorities identified by a range of stakeholders is imperative. This project will inform policy makers and research funding bodies about what really matters to these groups.
银屑病影响英国超过 200 万人。它对个人有重大的心理和社会影响，并给英国国家卫生服务体系带来高昂的经济成本。关于银屑病有许多尚未解答的问题。
制定一项方案，与患者、家属、照顾者和医疗保健专业人员合作，确定银屑病的不确定性；通过共识同意确定银屑病十大不确定性清单；并将未解答的优先问题分发给研究人员和资助者，以促进工作，重点解决利益相关者认为最重要的不确定性。
已成立银屑病优先事项设定伙伴关系，以根据詹姆斯·林德联盟（James Lind Alliance）倡导的透明方法收集银屑病的不确定性。一个由利益相关者组成的指导小组向患者、家属、照顾者和医疗保健专业人员分发了一份初步调查，以收集有关重要银屑病问题的信息。在消除重复后，将对不确定性进行整理，并与现有证据进行核对，以确定是否已经解决了任何不确定性。“真正的不确定性”将在第二次调查中分发给利益相关者，供他们根据重要性进行排名。在最后一次研讨会上，将对信息进行提炼，生成一份十大不确定性清单。
通过遵循本文概述的方案，将确定一份优先考虑的不确定性清单，该清单将用于为银屑病研究议程提供信息。
针对一系列利益相关者确定的优先事项进行的研究至关重要。该项目将向政策制定者和研究资助机构通报这些群体真正关心的问题。
