Medical College of Wisconsin
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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 PMID: 30032653

Pubmed ID



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


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


jenkins-FCD Prod-300 626508253d14e4184314fb9f66322a03a5906796