Invasive fungal infections (IFI) represent a significant burden for patients and are often underestimated in clinical practice and public awareness. Patient perspectives remain inadequately addressed in research and healthcare initiatives. This includes missing patient and healthcare professional education, diagnostic delays and side effects of treatments, leading to prolonged and complex patient journeys. The Working Group aims to improve awareness, advocacy, and to integrate patient-centered outcomes into clinical practice and research by actively involving patients and caregivers.
Objective 1: Identify needs and challenges faced by patients, relatives and caregivers
Structured interviews to document patient journeys with IFI to incorporate individual experience into advocacy efforts and research proposals. Interviews are planned with IFI patients from low, middle, and high-income countries, to identify and address needs aligned with their local requirements. Results will be analyzed and published to gain visibility.
Objective 2: Establish a platform for patients, relatives and caregivers
To foster patient education and disease awareness, we will create a virtual hub for patients and relatives to exchange experiences, access educational materials, and participate in webinars on IFI topics relevant to patients as identified in objective 1 and led by experts in the field. Such material may include information on fungal diseases, diagnostics, treatments, and follow-up care tailored for patients and caregivers in accessible language. Translation of all educational material in several languages is planned to allow worldwide access. Peer-to-peer support programs will be promoted on this platform. We aim to connect with existing regional and/or disease-specific initiatives such as the
Aspergillosis Patient Group (NHS-funded, UK), and the Mycology Advocacy, Research and Education (MyCARE) based in the US.
Objective 3: Filling the gap in research activities
We aim to include the patient’s perspective in research development and support patients to access specialized health care services including clinical trials The Working Group will therefore serve as a link between patients, clinicians, and researchers to address unmet needs in the management of invasive mycoses. The development of patient-related outcome measures (PROMs) for IFI will be developed together with IFI patients and survivors in order to be integrated into trials. For coccidiomycosis, the first ever IFI-specific PROMs were recently developed based on interviews of 25 patients (Harvey et al, 2024). By embedding patient experiences (PREMs) and needs into the picture of clinical research and public advocacy, the group aims to improve diagnostic processes, therapeutic outcomes, and the overall quality of life for individuals affected by IFI. Lastly, the continuous exchange with patients in objective 1 and 2 will help revealing priority research questions.