Cancer-Related Distress and Unmet Needs Among Acute Myeloid Leukemia Survivors

Background: Individuals with acute myeloid leukemia (AML) are at risk for significant physical and psychological burden related to their illness. While overall survival rates are improving, treatments may be associated with lengthy hospitalizations, and the risk of relapse remains substantial. This study explores cancer-related distress and concerns among AML survivors, as well as supportive care received from their healthcare team.

Methods: 58 AML patients and survivors enrolled in the Cancer Support Community's online Cancer Experience Registry; 38 completed CancerSupportSource^® (CSS) questions, a 25-item distress screening tool in which they rated their level of concern (0=Not at all; 4=Very seriously) about emotional well-being, symptom burden and impact, body image and healthy lifestyle, healthcare team communication, and relationships and intimacy. CSS includes validated subscales that identify individuals at risk for clinically significant depression and anxiety. Participants also completed questions about their unmet needs and desired help. Pearson's correlation coefficients were used to explore bivariate associations between socio-demographic variables and clinical history with overall distress (sum of CSS ratings) in AML respondents.

Results: Mean (SD) age was 50 (14) years (range: 18-77); mean time since diagnosis was 5.6 years. Participants were 87% White and 64% female. 33% were receiving treatment at the time of taking the survey; 23% had ever experienced a recurrence of their cancer. Participants' greatest concerns (% rated Moderately to Very seriously) included: eating and nutrition (61%); exercising (57%); fatigue (53%); worry about the future and what lies ahead (51%); feeling irritable (51%); health insurance or money worries (49%); sleep problems (47%); changes or disruptions in work, school, or home life (46%); and feeling sad or depressed (45%). Based on responses to CSS risk screening subscales, more than half of participants (54%) were at risk for clinically significant level of anxiety; 42% were at risk for clinically significant levels of depression. Over half of respondents indicated their healthcare team asked about emotional concerns (58%); half said they were asked about lifestyle concerns such as diet and exercise (50%) and about financial concerns (e.g., out-of-pocket costs) (50%); roughly two-out-of-five had a health professional talk to them about employment concerns (40%) or family (42%). A majority of participants wished they had received more help with managing emotions related to cancer (67%), managing short-term (50%) and long-term (61%) side effects and symptoms, changing lifestyle behaviors (53%), and financial advice/assistance (47%). In bivariate analysis, greater overall distress was associated with younger age (r=-.49; p<.01), less education (r=-.44; p<.01), and lower annual household income (r=-.74; p<.001).

Conclusions: This exploratory study demonstrates that substantial proportions of AML survivors express concerns about emotional distress, symptom burden and impact, and practical matters including finances. Yet, many report they are not counseled about these concerns, and the majority wish for more help to address these needs. Efforts are needed to enhance social and emotional support and improve access to integrated supportive care for individuals with AML, to reduce the potential impact of illness burden and distress on quality of life, treatment adherence, and other illness outcomes. Future research will examine multivariate predictors of distress and unmet needs.