Cotton Martine, McCaddon Andrew
School of Public Health, Faculty of Medicine and Biomedical Sciences, The University of Queensland, Brisbane, QLD, Australia.
Faculty of Social and Life Sciences, Wrexham Glyndwr University, Wrexham, UK.
J Patient Exp. 2023 Jan 17;10:23743735231151767. doi: 10.1177/23743735231151767. eCollection 2023.
There is limited research evaluating the diagnosis and treatment of patients with autoimmune gastritis (AIG) and pernicious anemia (PA). We used a 2-phase data collection process to examine the literature and individual patient accounts. Phase one comprised a systematically conducted literature review focusing on diagnosis and treatment, relationships with healthcare practitioners and health-related quality of life (HRQOL). Phase two involved analysis of individual accounts via posts in online patient forums. We identified 6 main themes: the diagnosis journey, seeking treatment, patient-provider relationships, HRQOL, patient disempowerment, and the "expert patient." Our findings confirm significant knowledge gaps concerning AIG/PA across the healthcare community. These have a cascading effect starting with delays in diagnosis and poor treatment protocols and often lead to complete withdrawal from care seeking. The establishment of standard consensus guidelines and improved clinical awareness should be urgently addressed. Interventions that better help patients understand their illness are also needed to improve psychological health. Without these changes disengagement from health systems, and poor health outcomes, will continue for this population group.
评估自身免疫性胃炎（AIG）和恶性贫血（PA）患者的诊断与治疗的研究有限。我们采用两阶段数据收集流程来审视文献及个体患者的描述。第一阶段包括系统地进行聚焦于诊断与治疗、与医疗从业者的关系以及健康相关生活质量（HRQOL）的文献综述。第二阶段涉及通过在线患者论坛中的帖子对个体描述进行分析。我们确定了6个主要主题：诊断历程、寻求治疗、医患关系、健康相关生活质量、患者失权以及“专家型患者”。我们的研究结果证实了整个医疗界在AIG/PA方面存在重大知识差距。这些差距产生连锁反应，始于诊断延迟和治疗方案不佳，且常常导致患者完全放弃寻求治疗。应紧急解决制定标准共识指南和提高临床意识的问题。还需要采取能更好地帮助患者了解自身疾病的干预措施，以改善心理健康。若无这些改变，该人群将继续脱离卫生系统，健康状况也会不佳。
