Chronic Symptom Burden Is Significant and Highlights the Need for Improved Detection and Recognition of Symptoms in Patients with Light Chain Amyloidosis

Living with light chain amyloidosis (AL) poses challenges, with a high symptom burden particularly in the early period after diagnosis and initial treatment. In patients living with AL for ≥1 years, patient-reported symptoms and the impact on quality of life have not been well described.

Researchers wanted to ascertain the most clinically relevant and important symptoms impacting daily life after overcoming the “early mortality stage” of AL that occurs during the first year. They conducted a qualitative study using semistructured interviews of patients who had been diagnosed with AL and had been identified based on information from a United States–based cancer center and amyloidosis support groups.

The study sample prioritized diversity of patient participants with respect to gender and amyloid organ involvement. The interviews were audiotaped, recorded, coded, and examined.

Between July 2019 and October 2019, 20 subjects were interviewed; 15 of these participants had lived with a diagnosis of systemic AL for ≥1 years, ranging from 1.5 years to 13 years. Involvement of specific organs varied; cardiac involvement was exhibited by 7 patients, renal involvement was exhibited by 6 patients, 2 patients had neurologic symptoms, and 1 patient had gastrointestinal involvement. Finally, in 5 patients there were ≥3 organs involved.

Active chemotherapy treatment was being administered to 5 patients and 8 had been treated with a stem-cell transplant previously.

A wide range of symptoms was reported by patients. A lack of symptom burden resolution and uncertainties about perception of symptoms were frequently expressed concerns. Dyspnea, fatigue, gastrointestinal symptoms, pain, and swelling were also frequently reported. Some patients talked about the emotional impact of living with AL and their apprehension about their symptoms, which were secondary to the disease itself, in addition to the treatment.

General symptoms described included fatigue, weight changes, cold intolerance, sleep disturbance, bruising, and speech or vocal changes. Cardiac signs included swelling, dizziness, and shortness of breath. Patients also reported gastrointestinal signs, including taste disturbances, difficulties chewing, dysphagia, nausea, anorexia, diarrhea, and constipation. Neuromuscular concerns included pain, gait, and imbalance. Signs of mental anxiety, anger, depression, memory issues, forgetfulness, and social withdrawal were discussed by patients. Some participants described having foamy urine, bruising, and brittle nails.

The researchers characterized clinically important symptoms of patients living with AL after overcoming the first, critical year after diagnosis; this is when there is the highest level of early mortality and symptom burden.

This study underscores that for patients with AL, the chronic symptom burden is significant and highlights the need for improved diagnosis and recognition of symptoms. There is a need for future research to characterize the experience of patients who have undergone the typical disease course over the first year, to improve patient education efforts.

Source: D’Souza A, Myers J, Finkel M, et al. Living with amyloidosis: perspectives from patients living with light chain (AL) amyloidosis for over a year. Presented at: XVII International Symposium on Amyloidosis 2020; September 14-18, 2020. Abstract PT041.

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