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Shared Vision for Improving Outcomes for Serious Fungal Diseases: Report of a Patient, Caregiver, and Clinician Summit

Summary

Patients with serious fungal infections face significant challenges including long delays before diagnosis, substantial emotional and financial burden, and lasting effects on quality of life. A summit brought together patients, their caregivers, and fungal disease experts to share experiences and identify priorities for improving care. The group identified needs for better diagnostic tools, new treatments, improved medical education about fungal diseases, and patient support programs to help future patients and their families navigate fungal infections more effectively.

Background

Invasive fungal diseases (IFD) cause approximately 2.5 million deaths annually worldwide, but the true disease burden is underestimated due to lack of public and healthcare provider awareness. Patient-centered advocacy efforts have proven effective in other disease areas but have been lacking for fungal diseases.

Objective

To bring together patients with IFD, caregivers, and mycology experts to document patient experiences with invasive fungal disease and establish priorities for mycology education, advocacy, and research.

Results

Five of six patients (83%) experienced delayed IFD diagnosis. Key themes included delayed diagnosis, importance of caregivers as advocates, impact on quality of life, and commitment to improve future patient experiences. Consensus priorities included web-based educational resources, improved diagnostics, new antifungal drugs, patient-reported outcomes research, and public/provider education to ‘think fungal.’

Conclusion

The summit identified substantial nonclinical burdens of IFD including psychological, financial, and quality of life impacts. Patients and experts prioritized education, research, and advocacy goals to raise awareness of IFD and improve outcomes, with plans to expand the MyCARE initiative and conduct future summits.
  • Published in:Open Forum Infectious Diseases,
  • Study Type:Consensus Report, Patient-Centered Summit,
  • Source: PMID: 38854394, DOI: 10.1093/ofid/ofae226
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