There are Unmet Care Needs Among Patients with AML and Survivors

By Kerri Fitzgerald - Last Updated: December 11, 2019

Many patients with acute myeloid leukemia (AML) and survivors report concerns of emotional distress, symptom burden and impact, and practical matters, according to a study presented at the 2019 ASH Annual Meeting. “Yet, many report [that] they are not counseled about these concerns, and the majority wish for more help to address these needs,” the authors noted.

The study included 58 patients (mean age, 50 years; range, 18-77 years) with AML and survivors who were enrolled in the Cancer Support Community’s online Cancer Experience Registry. Thirty-eight participants completed CancerSupportSource® (CSS) questions—a 25-item distress screening tool in which they rated their level of concern about emotional well-being, symptom burden and impact, body image and healthy lifestyle, healthcare team communication, and relationships and intimacy. Participants also completed questions about their unmet needs and areas in which they sought additional help.

Mean time from diagnosis was 5.6 years; most patients (87%) were white, and 64% were female. At the time of the survey, 33% of patients were receiving treatment, and 23% had ever experienced disease recurrence.

The top patient-reported concerns were eating and nutrition (61%); exercising (57%); fatigue (53%); worry about the future and what lies ahead (51%); feeling irritable (51%); worries about health insurance or money (49%); sleep problems (47%); changes or disruptions in work, school, or home life (46%); and feeling sad or depressed (45%).

More than half of participants (54%) were at risk for clinically significant levels of anxiety, and 42% were at risk for clinically significant levels of depression. Patients reported that they discussed the following with their healthcare teams: emotional concerns (58%), lifestyle concerns such as diet and exercise (50%), financial concerns (50%), employment concerns (40%), or family (42%).

About two-thirds of patients (67%) said they wished they received more help with managing cancer-related emotions. Others wished to have more help with managing short- (50%) and long-term (61%) adverse events and symptoms, lifestyle behavior changes (53%), and financial advice/assistance (47%).

Younger patients, (P<0.01), those with less education (P<0.01), and those with a lower annual household include (P<0.001) had greater overall distress.

“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,” the researchers concluded. 


Zaleta AK, Gardan P, McManus S, et al. Cancer-related distress and unmet needs among acute myeloid leukemia survivors. Abstract 4787. Presented at the 2019 ASH Annual Meeting, December 9, 2019; Orlando, Florida.

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