Litchfield Ian, Greenfield Sheila, Harper Lorraine
Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham.
University Hospitals Birmingham NHS Foundation Trust, Edgbaston, Birmingham, UK.
Rheumatol Adv Pract. 2021 Nov 4;5(3):rkab075. doi: 10.1093/rap/rkab075. eCollection 2021.
Improvements in care have led to the recognition of ANCA-associated vasculitis (AAV) as a chronic condition; however, the self-management strategies considered a crucial component of the care model for patients with more prevalent chronic conditions are yet to be integrated formally into the treatment of AAV patients. The aim of the work we present here is to identify those self-management processes and tasks already being adopted by patients with AAV to help inform existing care and the development of a structured self-management programme.
We conducted a series of focus groups and semi-structured interviews with AAV patients, collating the data and performing a deductive analysis based on a consolidated framework of self-management processes.
Despite the unique attributes and demands of AAV, patients adopted self-management behaviours previously identified and supported in patients with more prevalent chronic diseases. They accessed information on their disease proactively and learnt to mitigate their symptoms and side-effects. They pursued a range of health-promotion activities and accessed support from their social network and beyond and, ultimately, learnt to integrate the condition into their everyday life.
Our work has highlighted some key areas of self-management that might be addressed usefully and immediately, including the provision of more consistent information relating to evolving symptoms and side-effects, additional support in accessing both appropriate care and community-based resources, and the use of interventions to bolster resilience. Our findings will inform the development of a tailored self-management programme, but in the meantime provide a more contemporary context for current clinician-patient conversations.
医疗护理的改善已使抗中性粒细胞胞浆抗体相关性血管炎（AAV）被视为一种慢性病；然而，对于更为常见的慢性病患者，自我管理策略被认为是护理模式的关键组成部分，但尚未正式纳入AAV患者的治疗中。我们在此展示的这项工作的目的是确定AAV患者已经采用的那些自我管理流程和任务，以帮助为现有护理及结构化自我管理计划的制定提供信息。
我们对AAV患者进行了一系列焦点小组讨论和半结构化访谈，整理数据并基于自我管理流程的综合框架进行演绎分析。
尽管AAV具有独特的特征和需求，但患者采用了先前在更为常见的慢性病患者中已得到确认和支持的自我管理行为。他们主动获取有关自身疾病的信息，并学会减轻症状和副作用。他们开展了一系列健康促进活动，并从社交网络及其他渠道获得支持，最终学会将病情融入日常生活。
我们的工作突出了一些自我管理的关键领域，这些领域可能会立即得到有益的解决，包括提供与不断变化的症状和副作用相关的更一致的信息、在获取适当护理和社区资源方面提供更多支持，以及使用干预措施增强恢复力。我们的研究结果将为制定量身定制的自我管理计划提供信息，但同时也为当前临床医生与患者的交流提供了更具时代性的背景。
