A comprehensive survey conducted by Avant Health and Rare Patient Voice has highlighted the significant challenges faced by rare disease patients and caregivers in securing a timely diagnosis. Spanning February to April 2024, the study gathered insights from 800 participants across the US, UK, Spain, and Germany.
Key Findings:
- Prolonged Diagnosis: Two-thirds of respondents from the US, UK, Spain, and Germany reported that diagnosing their rare disease took up to five years, with 21% waiting over a decade. The US showed a slightly quicker diagnosis time compared to the UK, where patients faced the longest delays.
- Misdiagnosis is Common: Over half of the patients were misdiagnosed at least once, with UK patients experiencing the highest rate of misdiagnosis at 58%.
- Specialist Access Issues: Finding specialized doctors remains a hurdle, with 72% encountering difficulties. Germany had the highest percentage of patients struggling to find relevant specialists.
- Multiple Specialist Visits: The majority of patients needed consultations with more than three specialists before receiving a correct diagnosis, particularly in Spain.
- Denied Tests and Treatments: A significant portion of patients faced denials for necessary diagnostic tests or treatments, with Germany reporting the highest incidence of this issue.
Dr. Siva Narayanan, CEO of Avant Health, emphasized that the diagnostic journey for rare disease patients is not only prolonged but also fraught with challenges, especially in some European countries. The findings underscore the need for enhanced healthcare access and service delivery for rare disease patients across these geographies.
For a deeper understanding of this crucial issue facing the rare disease community, contact Dr. Siva Narayanan at Avant Health for more details.
For more information, please contact:
Dr. Siva Narayanan
Avant Health
Bethesda, MD, USA
+1-301-799-8268
380222@email4pr.com
