Research, Lupus Foundation of America Inc, Washington, District of Columbia, USA
Faegre Drinker Consulting, Faegre Drinker Biddle and Reath LLP, Washington, DC, USA.
Lupus Sci Med. 2021 Feb;8(1). doi: 10.1136/lupus-2020-000433.
The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritise and address top barriers in lupus impacting diagnosis, care, treatment and research. To conduct this process, the ALPHA Project convened a multistakeholder Global Advisory Committee (GAC) of lupus experts and collected input from global audiences, including patients. In phase I, the ALPHA Project used expert interviews and a global survey of lupus experts to identify and categorise barriers into three overarching pillars: drug development, clinical care and access to care. In phase II, reported here, the GAC developed recommended actionable solutions to address these previously identified barriers through an in-person stakeholder meeting, followed by a two-round scoring process. Recommendations were assessed for feasibility, impact and timeline for implementation (FIT), where potential FIT component values were between 1 and 3 and total scores were between 3 and 9. Higher scores represented higher achievability based on the composite of the three criteria. Simplifying and standardising outcomes measures, including steroid sparing as an outcome (drug development) and defining the lupus spectrum (clinical care) ranked as the highest two priority solutions during the GAC meeting and received high FIT scores (7.67 and 7.44, respectively). Leveraging social media (access to care) received the highest FIT score across all pillars (7.86). Cross-cutting themes of many solutions include leveraging digital technology and applying specific considerations for special populations, including paediatrics. Implementing the recommendations to address key barriers to drug development, clinical care and access to care is essential to improving the quality of life of adults and children with lupus. Multistakeholder collaboration and guidance across existing efforts globally is warranted.
ALPHA 项目是一个全球性的共识行动，旨在确定、优先考虑和解决影响狼疮诊断、护理、治疗和研究的主要障碍。为了进行这一过程，ALPHA 项目召集了一个由狼疮专家组成的多方利益相关者全球顾问委员会（GAC），并从包括患者在内的全球受众那里收集了意见。在第一阶段，ALPHA 项目使用专家访谈和对全球狼疮专家的调查，将障碍分为三个总体支柱：药物开发、临床护理和获得护理。在第二阶段，这里报告的是，GAC 通过现场利益相关者会议以及两轮评分过程，制定了针对这些先前确定的障碍的建议可操作解决方案。建议根据可行性、影响和实施时间表（FIT）进行评估，潜在的 FIT 组件值在 1 到 3 之间，总分数在 3 到 9 之间。根据这三个标准的综合得分，分数越高表示可实现性越高。简化和标准化结果衡量标准，包括将类固醇节省作为结果（药物开发）和定义狼疮谱（临床护理），在 GAC 会议期间被列为两个最高优先级解决方案，并获得了较高的 FIT 分数（分别为 7.67 和 7.44）。利用社交媒体（获得护理）在所有支柱中获得了最高的 FIT 分数（7.86）。许多解决方案的交叉主题包括利用数字技术和针对特殊人群（包括儿科）应用特定考虑因素。实施这些建议以解决药物开发、临床护理和获得护理的关键障碍，对于提高成人和儿童狼疮患者的生活质量至关重要。需要在全球范围内进行多方利益相关者的合作和指导。
