Research conducted by MPE on the challenges around AL amyloidosis diagnosis and the impact of a delayed diagnosis found that approximately 47% of patients waited 5 months or more to get a diagnosis and 22% waited over a year.
Our research found that a delayed diagnosis can have a significant impact in several areas of a patient’s life, including on:
- Long-term symptoms and complications
- Daily activities, quality of life and emotional well-being
- Family members and carers
- Career and finances
- Treatment options and survival
Read the full report, including additional findings and recommendations, here.
A clear call to action from the research was to help clinicians identify AL amyloidosis earlier. To meet this aim, MPE has developed an Amyloidosis Diagnosis Pathway outlining the main signs and symptoms of amyloidosis and the tests and investigations that should be undertaken if amyloidosis is suspected.
Help improve diagnosis by sharing the Pathway with your GP.
The Amyloidosis Diagnosis Pathway is also available in Spanish. If you would like the Pathway available in your national language, please contact info@mpeurope.org
Late diagnosis impacts directly on patients’ quality of life. To better understand patients’ experiences regarding AL amyloidosis diagnosis and treatment, and how these impact on quality of life, MPE conducted qualitative research and published the report “Health-related quality of life, diagnosis and treatment experiences of AL amyloidosis patients.” This report shows the important needs of patients, particularly those related to the diagnosis, treatment and gaps in research of AL amyloidosis.
Read the full report and conclusions here.
