AL amyloidosis is a rare condition and limited research on patient perspectives and needs exists. With the aim 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.”
According to this report, “receiving a diagnosis of AL amyloidosis can make people feel as if they have lost control and have uncertainty about the future. Despite this, many patients said they have faced their diagnosis and adapted to it. Over time, they started to feel hopeful about future treatments and making their lives better. They desire better coordination across their healthcare team, along with better communication channels with members of their care team.”
Quality of life is crucial for patients of any disease. Based on the findings, AL amyloidosis patients value a spending time with family and friends, being able to do their hobbies, and having the physical health to exercise and move about. However, the impacts of the disease and treatment side effects can make “returning to normal” difficult and many patients expressed having to adapt their lives to the disease.
“I think you start living from day to day, because everything progresses so much that if you’re
lucky it’s good, but everything can change very quickly,” said one AL Amyloidosis patient.
To reduce the impact of AL amyloidosis and increase quality of life, it is important to get a timely diagnosis. The symptom complications associated with a delayed diagnosis of AL amyloidosis have a significant impact on mental and emotional health and physical fitness, and extend beyond the patient to affect family members and financial stability. Other 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 five months or more to get a diagnosis and 22% waited over a year. Read more information about this diagnosis research and the Amyloidosis Diagnosis Pathway here.
AL amyloidosis call to action
MPE’s research shows the important needs of patients, particularly those related to the diagnosis, treatment and gaps in research of AL amyloidosis. In light of these findings, MPE recommends that patient advocates and patient organisations take the following actions:
- Continue raising awareness around AL amyloidosis.
- Work with MPE and MPE member associations to establish ‘core’ resources for amyloidosis patients.
- Work to establish an AL amyloidosis ‘buddy’ system.
- Develop or link to publicly available resources about clinical trials.
- Work towards or advocate for practice guidelines that have an integrated care approach for amyloidosis patients.
Read the full report and conclusions here.
About AL Amyloidosis
AL amyloidosis is the most prevalent type of amyloidosis, a group of haematological diseases that occurs when soluble proteins misshape and bind together giving rise to insoluble aggregates, called amyloid fibrils. These fibrils deposit in organs and tissues and interfere with their normal functioning. However, AL amyloidosis is still considered a rare condition, with an estimated incidence of nine cases per million person-years. It affects men slightly more often than women and the average age of diagnosed patients is 63 years.