Unlock PsA: Stratifying the Impact of Psoriatic Arthritis in Children and Adults

该项目的目的是：揭示具有不同治疗需求的银屑病关节炎（PsA）人群。背景：PsA的缓解率很低，许多人在确诊多年后仍有症状。即使人们的疾病看起来不同，早期PsA的治疗也倾向于按照相同的顺序进行，在大多数情况下，第一种“疾病改善药物”是甲氨蝶呤。可能有一群人有相同的问题组合，他们的生活受到PsA的类似影响。这些群体可能需要不同的治疗方法，比如开始使用不同的药物或早期的物理治疗。由于PsA是如此多样和复杂，这些群体对医生来说可能并不明显，只能通过人工智能的新方法来发现。这个项目将使用这些方法来计算出PsA有多少组，每组中的人有什么经历，并创建一个工具来确定他们在疾病之旅开始时属于哪一组。这将有助于从不同的医疗保健领域选择最佳的治疗方法，并了解如果人们的PsA始于童年或成年，治疗方法是否应该相同。方法和途径：新诊断为PsA的儿童和成人将纳入欧洲和加拿大的六项研究。这些研究收集了PsA诊断的个人特征、疾病及其对日常生活的影响的信息。人工智能的新方法将发现在诊断时和开始使用甲氨蝶呤后一年内PsA影响相同的人群。这将有助于确定哪些群体可能需要在早期接受不同医疗领域的不同治疗。然后，该项目将寻找在儿童期和成年期发病的人群之间共有的PsA组。这可能会为儿童时期发病的人提供更广泛的治疗方法，缩短各个年龄段获得正确治疗的时间。患者参与研究的设计和实施：患者合作伙伴的参与来自儿童、年轻人和家长团体（Your Rheum， CLUSTER冠军，SNAC， CCAA）以及患有PsA的成年人（研究用户组，BritPACT）。一个优先研究领域是弄清楚哪些PsA患者在确诊后应该立即接受不同的治疗。这些小组随后帮助计划该项目向前推进，应该研究经验，增加对甲氨蝶呤的反应作为一个关键项目目标，以及比较儿童期和成年期PsA的重要性。整个项目计划有五个参与焦点小组，以找出分享发现的最佳方式（焦点小组1和5），开发统计模型（焦点小组2,3和4），解释结果（焦点小组2,3和4），给出反馈和庆祝参与（研讨会5）。PsA患者的预期收益：不同类型PsA驱动的治疗选择。对人们的疾病将如何发展更加确定，对为他们选择的治疗方法更有信心。一种新的工具将预测甲氨蝶呤对PsA身体特征、疼痛、生活质量和其他症状的疗效。能够从甲氨蝶呤获益的人可以更早地获得这种药物，而那些疾病只在某些方面有反应的人，或者那些服用甲氨蝶呤后生活质量没有改善的人，可以在更早的阶段给予其他治疗选择，如不同的抗风湿药、物理治疗、职业治疗或心理治疗，以预防疾病的影响。这将缩短缓解时间，减轻疾病负担，并减少不必要药物的副作用。最后，如果该项目发现PsA在儿童期和成年期都有相同的发病模式，那么患有PsA的儿童和年轻人可以获得更大范围的治疗。

Aim of the project: to uncover groups of people with psoriatic arthritis (PsA) who have different treatment needs. Background: Remission rates in PsA are low with many people still having symptoms years after they are diagnosed. Treatments for early PsA tend to be given in the same order even if peoples' diseases look different, with the first 'disease-modifying drug' being methotrexate in most cases. There might be groups of people who have the same combinations of problems and whose lives are impacted in the similar ways by PsA. These groups may need different treatments like starting with a different drug or earlier physiotherapy. Because PsA is so varied and complicated, the groups may not be obvious to doctors and can only be found using new methods in artificial intelligence. This project will use these methods to figure out how many groups of PsA there are, what experiences people in each group have, and create a tool to figure out which group they belong to right at the start of their disease journey. This will help pick the best treatments from different areas of healthcare and understand if treatments should be the same if people's PsA started in childhood or adulthood. Methods and approach: Children and adults with newly-diagnosed PsA will be included from six studies across Europe and Canada. The studies collect information from a diagnosis of PsA over time on personal characteristics, disease, and its impact on everyday life. New methods in artificial intelligence will find groups of people who share PsA impacts at diagnosis and in the year after starting methotrexate. This will help pinpoint which groups might need to have different treatments from different areas of healthcare early on. The project will then look for groups of PsA that are shared between people whose disease started in childhood versus adulthood. This could lead to a greater range of treatments for people whose disease started in childhood and shorter times to the right treatment across ages. Patient involvement in the design and conduct of the study: Patient partner involvement comes from children, young persons and parent groups (Your Rheum, CLUSTER champions, SNAC, CCAA) and from adults with PsA (Research User Group, BritPACT). A priority research area was to figure out which groups of people with PsA should have different treatments right after they are diagnosed. These groups have then helped plan this project moving forward, with which experiences should be studied, adding response to methotrexate as a key project aim, and the importance of comparing PsA in childhood versus adulthood. There are five involvement focus groups planned through the project, to figure out the best way to share the findings (focus groups 1 & 5), develop the statistical models (focus groups 2, 3 & 4), interpret the results (focus groups 2, 3 & 4), give feedback and celebrate involvement (workshop 5). Expected benefits for people with PsA: Treatment choices driven by different types of PsA. More certainty about how people's disease will progress and more confidence in the treatments picked for them. A new tool will predict how well methotrexate will work for PsA physical features alongside pain, quality of life and other symptoms. People who would benefit from methotrexate could be offered this drug earlier, and those whose disease only responds in certain areas, or whose quality of life does not improve after taking methotrexate could be given other treatment options at an earlier stage such as different anti-rheumatic drugs, physiotherapy, occupational therapy or psychology to prevent the impacts of disease. This would shorten the time to remission and decrease the burden of disease, as well as lower side-effects from unnecessary medications. Finally, children and young people with PsA could be offered a greater range of treatments if this project finds PsA has the same patterns whether it starts in childhood or adulthood.