Patient-reported distress is prevalent in systemic light chain (AL) amyloidosis but not determined by severity of disease.

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.