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Patient-reported distress is prevalent in systemic light chain (AL) amyloidosis but not determined by severity of disease. Amyloid 2018 Jun;25(2):129-134

Date

07/24/2018

Pubmed ID

30032653

DOI

10.1080/13506129.2018.1486298

Scopus ID

2-s2.0-85050259150 (requires institutional sign-in at Scopus site)   6 Citations

Abstract

We conducted this retrospective study to assess patient-reported distress in light chain (AL) amyloidosis, using the Distress Thermometer (DT) survey at first evaluation at our center. Of 78 patients who completed the survey, 75 scored their distress (distress: <4 - low, 4-6 - moderate, >6 - high). Moderate and high distress were self-reported by 30% and 17% patients, respectively. More patients with distress lived alone and had lower haemoglobin than patients without. AL stage did not correlate with distress (Stage I/II median DT 4 compared to 3 in Stage III/IV, p = .09), while cardiac AL was associated with lower distress at 3 compared to 5 in those without (p = .02). Karnofsky performance score (KPS) was concordant with stage (KPS ≥90 in 60% stage I/II versus 19% stage III/IV, p = .005) and cardiac involvement (26% with versus 63% without cardiac involvement had KPS ≥90, p = .01). Significant correlates of high distress included dealing with children, family health, depression, fears, nervousness, sadness, appearance, nausea, dry nose/congestion, memory/concentration, pain, sleep, neuropathy symptoms, and bathing/dressing. In conclusion, we demonstrate moderate to high distress in 47% of AL population at initial evaluation. Distress in amyloidosis is not influenced by amyloid stage or type of organ involvement.

Author List

Wright NL, Flynn KE, Brazauskas R, Hari P, D'Souza A

Authors

Ruta Brazauskas PhD Associate Professor in the Institute for Health and Equity department at Medical College of Wisconsin
Anita D'Souza MD Associate Professor in the Medicine department at Medical College of Wisconsin
Kathryn Eve Flynn PhD Vice Chair, Professor in the Medicine department at Medical College of Wisconsin
Parameswaran Hari MD Adjunct Professor in the Medicine department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Adult
Aged
Aged, 80 and over
Anxiety
Depression
Female
Humans
Immunoglobulin Light-chain Amyloidosis
Male
Middle Aged
Prevalence
Retrospective Studies
Stress, Psychological