The Patient's Perspective on the Symptom and Everyday Life Impact of AL Amyloidosis | oneAMYLOIDOSISvoice
×
Or register here
Global Search

Trusted Resources: Education

Scientific literature and patient education texts

Back to Education / Scientific Articles

The Patient’s Perspective on the Symptom and Everyday Life Impact of AL Amyloidosis

key information

source: Amyloid: The International Journal of Experimental and Clinical Investigation

year: 2015

authors: Lin HM, Seldin D, Hui AM, Berg D, Dietrich CN, Flood E

summary/abstract:

Introduction:

This study aimed to understand the symptomatic impact of amyloid light-chain (AL) amyloidosis from the patient’s perspective.

Methods:

Four data sources were included: a literature review, review of online patient blogs, expert clinician interviews and patient interviews. Patients were recruited through the Amyloidosis Foundation and physician referral. Phone interviews were conducted and included open-ended concept elicitation questions. Thematic analysis was performed to identify symptoms and impacts. Descriptive statistics were used to characterize the sample. A conceptual model was developed depicting the impact of disease and treatment.

Results:

Two hundred seventy abstracts were identified; 10 articles were deemed relevant. No qualitative studies were identified, and only three studies included patient-reported measures. Ten patients completed interviews (mean age 61 [±8]; 7 male). Over 25 signs/symptoms were identified, including fatigue, weakness, dyspnea, neuropathy, edema, dizziness/lightheadedness, anorexia, diarrhea and constipation. Impacts included reduced physical and social functioning, and emotional impacts, including frustration, anxiety and depression. Findings from the blogs and expert interviews were consistent with patient reports.

Conclusion:

Symptoms can vary widely, but a core set of symptoms were common across patients. The conceptual model derived from this study can be used to ensure a patient-centered approach to drug development.

organization: Millennium Pharmaceuticals, USA; Boston Medical Center, USA; ICON PRO, USA

DOI: 10.3109/13506129.2015.1102131

read more

Related Content

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences.
More information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close

Community Key Collaborator

Support for this landing page is provided by an independent education grant from

Translation of this platform made possible through an independent education grant from

© 2024 rareLife solutions Inc.

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences.
More information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close