一个患者的旅程地图,为那些生活在自身免疫性肺膜蛋白质病的人
Ali Ataya1, Niki Plomaritis2, Michele Rhee3
1Division of Pulmonary, Critical Care and Sleep Medicine, University of Florida, 1549 Gale Lemerand Drive, Gainesville, FL, 32610, USA.
Respiratory medicine
|February 13, 2025
概括
患有自身免疫性肺膜蛋白质症 (PAP) 的患者经历了难以诊断和治疗的艰难旅程,经常面临误诊和财务负担. 这个患者旅程地图突出了对更好的教育和保险支持的未满足需求.
科学领域:
- 肺部医学 肺部医学
- 罕见疾病 罕见疾病
- 患者体验研究 研究研究
背景情况:
- 自身免疫性肺膜蛋白酶 (PAP) 对患者构成重大挑战,涉及复杂的诊断和治疗途径.
- 患者往往需要长时间的治疗才能得到准确的诊断和适当的护理.
研究的目的:
- 开发一个全面的患者旅程地图 (PJM) 针对美国的自身免疫性PAP.
- 识别和理解自身免疫性PAP患者所面临的经验,需求和障碍.
主要方法:
- 采用了多阶段的方法,包括文献分析,患者咨询委员会会议,在线调查和验证工作坊.
- 数据收集涉及咨询委员会中的7名患者,19名在线调查中的患者,6名在验证工作坊中的患者.
主要成果:
- 患者的旅程包括四个阶段:预诊断,诊断,治疗和持续监测.
- 患者报告了漫长且经常错误的诊断时间表,肺炎是常见的误诊.
- 治疗途径多样化和繁重,有大量的情感和财务问题,以及保险问题和获得专家护理等障碍.
结论:
- 开发的PJM说明了自身免疫PAP患者旅程的不一致,繁和复杂性.
- 这张地图为医学界提供了关键的见解,以改善这种罕见疾病的诊断,治疗和整体患者体验.
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