Amyloidosis: The Patient Perspective

To gain a better sense of the impact of the course of disease in amyloidosis from patient perspectives, an observational, cross-sectional, noninterventional study was conducted by the Association Française Contre l’Amylose (AFCA), the French association dedicated to fighting amyloidosis, in partnership with French referral centers for amyloidosis.

Between February and June of 2019, 603 patients aged ≥18 years with amyloidosis were recruited either through AFCA or French referral centers and completed a study-specific survey. Participants were mainly men (65%), with an average age of 66.8 years. The most common symptoms preceding diagnosis were breathlessness (49%), tingling (33%), difficulty walking (28%), pain (28%), and weight loss (22%), and the average time interval from initial symptom onset to confirmed diagnosis was 27.4 months.

Amyloidosis was initially suspected by hospital physicians (49%), then private practice specialists (23%), referral center physicians (11%), and general practitioners (6%). The diagnosis was most frequently confirmed by hospital physicians (57%) followed by referral center physicians (27%). During the preceding 12 months, 52% of patients had been hospitalized (average, 3 times), and 19% received emergency medical services (average, 2.3 times). After diagnosis, 58% of patients were monitored in one of the French amyloidosis centers. Most patients had a multidisciplinary team involved in the management of their amyloidosis (68%) and reported that they felt included in decision-making (71%).

Patients with amyloidosis experienced a myriad of symptoms, including tiredness (67%), pain (56%), sleep disturbances (56%), loss of appetite (46%), and infections (34%). Most patients reported limitations with activities of daily living (63%), strenuous activities (70%), sports and hobbies (62%), and changing positions (61%), such as standing up or bending over. Most patients reported experiencing anxiety/depression (58%), thinking about their disease daily (69%), never feeling at peace (69%), and not wanting to plan for the future (66%); however, 85% of patients reported feeling grateful for their support group.

This study underscores the severely debilitating impact of amyloidosis, not only physically but mentally as well. It also highlights the importance of increased education in the medical community to reduce the time to diagnosis in patients with amyloidosis to facilitate earlier initiation of disease-modifying therapies.


Damy T, Adams D, Bridoux F, et al. Amyloidosis from the patient perspective: the French daily impact of amyloidosis study. Amyloid. 2022:1-10.

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