■最近,越来越关注患者对研究和医疗保健改进的投入,促进了以患者为中心的宣传工作的扩大。第一次泛真菌病峰会,MYCology倡导的一部分,Research,&教育努力,把病人聚集在一起,看护者,和真菌学专家更好地记录患者侵袭性真菌病(IFD)的经历,并确定真菌学教育的优先事项,倡导,和研究。
■患有IFD的患者,他们的照顾者,临床医生,行业代表,政府官员,并邀请了耐心的宣传专业人士。患者和护理人员分享了他们的故事和与IFD的斗争。分组会议将真菌学专家与患者和护理人员分开,进行进一步讨论,以确定共同点和感知差距并制定建议。然后,这两个小组再次开会,以制定共识建议。
■IFD患者和他们的照顾者分享的经验反映了通常漫长的预诊断,急性治疗,长期治疗,和IFD的后处理恢复阶段。他们报告了大量的身体,心理,以及与IFD经验相关的财务负担,特别是与延迟诊断有关。他们重申需要协调以病人为中心的教育,同行支持,并倡导记录严重真菌感染的负担。真菌学专家讨论了解决真菌学领域差距的策略,比如训练不足,劳动力支持不足,以及需要与患者群体更多的合作。
■参加IFD患者峰会,家庭照顾者,和真菌学专家确定了与IFD相关的大量非临床疾病负担。患者和真菌学专家优先考虑了几个教育目标,倡导,和研究,以提高对IFD的认识并改善结果。
UNASSIGNED: Recently, increasing focus on patient input into research and healthcare improvements has fostered expanded patient-centered advocacy efforts. This first pan-fungal disease summit, part of the MYCology Advocacy, Research, & Education effort, brought together patients, caregivers, and mycology experts to better document patient experiences with invasive fungal disease (IFD) and establish priorities for mycology education, advocacy, and research.
UNASSIGNED: Patients who had suffered from IFD, their caregivers, clinicians, industry representatives, government officials, and patient advocacy professionals were invited. Patients and caregivers shared their stories and struggles with IFD. Breakout sessions separated mycology experts from patients and caregivers for further discussions to identify commonalities and perceived gaps and to formulate recommendations. The 2 groups then reconvened to develop consensus recommendations.
UNASSIGNED: IFD patients and their caregivers shared experiences reflecting the typically lengthy prediagnosis, acute treatment, long-term treatment, and posttreatment recovery stages of IFD. They reported substantial physical, psychological, and financial burdens associated with the IFD experience, particularly related to delayed diagnoses. They reaffirmed a need for coordinated patient-centered education, peer support, and advocacy to document the burden of serious fungal infections. Mycology experts discussed strategies to address gaps in the mycology field, such as insufficient training, inadequate workforce support, and a need to partner more with patient groups.
UNASSIGNED: A summit involving patients with IFD, family caregivers, and mycology experts identified a substantial nonclinical burden of disease associated with IFD. Patients and mycology experts prioritized several goals for education, advocacy, and research to raise awareness of IFD and improve outcomes.