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AML treatment often includes intense chemotherapy regimes, at induction, through consolidation and possibly following allogeneic stem cell transplantation for treatment of relapse. The highly cytotoxic treatment of AML can lead to adverse effects (AE) that continue long-term.
In their 2019 publication, Crossnohere et al.,1 present the results of a national US survey of side effects during and after treatment for AML. The group used an instrument, previously developed and piloted under the leadership of the Leukemia and Lymphoma Society (LLS), to prioritize the concerns of AML patients.2,3 Data was collected on patient issues such as decision-making, treatment delivery, physical impacts, and psychosocial effects. The group aimed to report the prevalence and severity of these AE.
Study design and patient demographics:
Table 1. Participant characteristics and clinical characteristics (1)
Survey participant characteristics |
||
---|---|---|
|
|
N(%) |
Participant role |
Patient Caregiver of living patient Caregiver of deceased patient |
901 (76.2) 159 (13.5) 122 (10.3) |
Age (mean years, range) |
|
54.7 (19-87) |
Gender |
Female |
689 (64.5) |
Race/ethnicity |
White/Caucasian Black/African American Other |
939 (87.9) 40 (3.7) 80 (8.4) |
Education |
Less than college degree College degree or higher |
365 (34.2) 702 (65.8) |
Insurance |
Private insurance |
820 (76.9) |
Clinical characteristics of patients |
||
Years since diagnosis (range) |
|
7.3 (1-40) |
Treatment (all that apply) |
Chemotherapy Allogeneic stem cell transplantation |
1165 (99.0) 719 (57.7) |
Disease status |
In remission |
1002 (86.0) |
The authors found that severe short-term effects of chemotherapy were extremely common in AML patients. Severe long-term effects were more commonly reported by caregivers. The prevalence of certain AEs also showed significant gender and age bias. The researchers concluded that the study of patient experience in this way could aid in the identification of areas of unmet need and drive patient-centered treatment development, as the patients are the ‘true experts of their disease experiences’. Their work has highlighted that there are a significant patient and caregiver burden associated with AML treatments and that this should be a priority for further patient-focussed drug development.
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