O'Sullivan Denis, Steinkoenig Ingrid, Brooke Mel
From Our Lady's Hospice and Care Services, Dublin, Ireland; University Hospitals, Cleveland, Ohio, USA; PsAZZ Support Group, Bath, UK.
D. O'Sullivan, BE, Patient Research Partner, Our Lady's Hospice and Care Services; I. Steinkoenig, BA, Patient Research Partner, University Hospitals; M. Brooke, Chair, PsAZZ Support Group.
J Rheumatol. 2017 May;44(5):686-687. doi: 10.3899/jrheum.170145.
In 2016, members of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) published their updated Treatment Recommendations for Psoriatic Arthritis. This paper describes how a patient-oriented guide to those treatment recommendations was developed by GRAPPA's patient research partners (PRP). We describe how the PRP developed a process for creating and implementing the guide. We also describe how we evaluated the diversity of the guide's potential patient audience, i.e., where each individual was in their diagnosis and treatment needs, and how we made the patient guide attractive, readable, and available to as broad a patient audience as possible.
2016年,银屑病和银屑病关节炎研究与评估小组(GRAPPA)的成员发表了他们更新后的银屑病关节炎治疗建议。本文描述了GRAPPA的患者研究合作伙伴(PRP)如何制定针对这些治疗建议的以患者为导向的指南。我们描述了PRP如何制定创建和实施该指南的流程。我们还描述了我们如何评估该指南潜在患者受众的多样性,即每个人在诊断和治疗需求方面的情况,以及我们如何使患者指南具有吸引力、可读性,并尽可能广泛地提供给患者受众。