Light Chain (AL) Amyloidosis: The Journey to Diagnosis.

ABSTRACT:

Background

Light chain (AL) amyloidosis is a rare, complex disease associated with significant morbidity and mortality. Delays in diagnosis are common and may have detrimental consequences on patients' prognosis. Too little is known regarding the patient journey to diagnosis.

Objective

The objective of this study was to describe the patient-reported journey to a correct diagnosis for AL amyloidosis.

Methods

Using a mixed-methods approach, data were collected from clinician (n = 4) and patient (n = 10) interviews and a survey of community-based patients with AL amyloidosis (n = 341). Data were used to document the patient experience between the onset of symptoms and the receipt of a diagnosis.

Results

Delays in diagnosis were common. Qualitative and quantitative

SUBMITTER: McCausland KL 

PROVIDER: S-EPMC5845075 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature