Amyloidosis from the patient perspective: the French daily impact of amyloidosis study.
Amyloid
; 29(3): 165-174, 2022 Sep.
Article
em En
| MEDLINE
| ID: mdl-35144512
ABSTRACT
BACKGROUND:
Amyloidosis is a complex group of rare conditions. For patients, amyloidosis is severely debilitating physically and psychologically. Currently, data are lacking to evaluate the medical, economic, and social burden of systemic amyloidosis.OBJECTIVE:
To analyse the patient burden according to the main types of systemic amyloidosis.METHODS:
The French Daily Impact of Amyloidosis study was an observational, cross-sectional and non-interventional study. Adults diagnosed with light chain (AL), transthyretin (ATTR), amyloid A (AA) and other rare forms of amyloidosis were eligible. Data regarding amyloidosis prevalence, diagnosis, management, and impact on everyday life were collected using a study-specific survey built by the Association Française Contre l'Amylose (AFCA) and the four French National Referral Centres for Amyloidosis.RESULTS:
A total of 603 patients, predominantly male (65%) with an average age of 66.8 years, including 170 AL, 224 ATTRv, 109 ATTRwt and 25 AA amyloidosis patients, completed the study-specific survey. The median delay from presentation to confirmed diagnosis was 27.4 months but varied according to amyloidosis type. Patients before diagnosis had breathlessness (49%), tingling sensation (33%), pain (28%), difficulty in walking (28%) and weight loss (22%). Amyloidosis was most frequently suspected (49%) and confirmed (57%) in local hospitals but managed in French amyloidosis referral centres (58%). Patients often reported problems with mobility, usual activities, pain/discomfort and anxiety/depression, but not with self-care.CONCLUSIONS:
Systemic amyloidosis severely impacts daily life. The delay to confirmed amyloidosis diagnosis needs to be reduced. Early, effective treatment is required to optimise patient benefits.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Neuropatias Amiloides Familiares
/
Amiloidose de Cadeia Leve de Imunoglobulina
/
Amiloidose
Tipo de estudo:
Diagnostic_studies
/
Observational_studies
/
Prevalence_studies
/
Risk_factors_studies
Limite:
Aged
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
Amyloid
Assunto da revista:
BIOQUIMICA
Ano de publicação:
2022
Tipo de documento:
Article
País de afiliação:
França