A cross-sectional study of patient-reported outcomes and symptom burden using PROMIS and PRO-CTCAE measures in light chain amyloidosis

Background We conducted a cross-sectional study to characterize health-related quality of life and symptom burden in individuals living with light chain (AL) amyloidosis. Methods Members of the Amyloidosis Support Groups, Inc. with AL amyloidosis who consented to this IRB-approved survey provided in...

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Bibliographic Details
Published in:Quality of life research 2023-06, Vol.32 (6), p.1807-1817
Main Authors: D’Souza, Anita, Szabo, Aniko, Akinola, Idayat, Finkel, Muriel, Flynn, Kathryn E.
Format: Article
Language:English
Subjects:
Amyloidosis
Amyloidosis - drug therapy
Clinical outcomes
Cross-Sectional Studies
Female
Humans
Immunoglobulin Light-chain Amyloidosis - diagnosis
Immunoglobulin Light-chain Amyloidosis - therapy
Male
Medicine
Medicine & Public Health
Patient Reported Outcome Measures
Public Health
Quality of Life - psychology
Quality of Life Research
Sociology
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Summary:Background We conducted a cross-sectional study to characterize health-related quality of life and symptom burden in individuals living with light chain (AL) amyloidosis. Methods Members of the Amyloidosis Support Groups, Inc. with AL amyloidosis who consented to this IRB-approved survey provided information on their amyloidosis diagnosis, treatment, symptoms, and functioning. HRQL was measured using PROMIS and PRO-CTCAE questionnaires. Results Among 297 participants who responded, the median age at diagnosis was 60 years (23–82) with 52% female and 90% white race. There were 69% AL (lambda) and 39% reported 3 or more organs involved with amyloidosis (58% cardiac, 58% renal, 30% neurological AL). Time from diagnosis was less than 2 years in 64 (22%), 2–5 years in 105 (36%), > 5 years in 126 (43%), and unknown in 2 (
ISSN:0962-9343
1573-2649
DOI:10.1007/s11136-023-03354-9