Acute Leukemia Patients' Needs: Qualitative Findings and Opportunities for Early Palliative Care

Abstract

Context: Patients with acute leukemias likely have needs that palliative care can respond to, yet little is known about specific challenges they face, particularly during active treatment. We examined acute myeloid leukemia (AML) patients' expressed challenges and supports after intensive induction chemotherapy.

Objectives: We aimed to understand opportunities for palliative care interventions in this population.

Methods: We conducted a qualitative study of AML patients with high-risk disease at Duke University Hospital, Durham, NC. Patients were interviewed about care experiences approximately 3 months after treatment initiation. Multiple coders used descriptive content analysis to identify common and recurrent themes.

Results: We analyzed 22 patient transcripts. Sample demographics included 10 (45.5%) females, 12 (54.5%) males, mean age 62 (SD 10.9), 19 (86.4%) non-Hispanic white, and three (13.6%) nonwhite/non-Hispanic. All had high-risk disease, by age, relapse status, or molecular markers. We identified four themes in our analysis: physical symptoms, psychological issues, uncertainty regarding prognosis, and patients' sources of support. Specific challenges noted by patients included feelings of helplessness/hopelessness, activity restriction, fatigue, fevers, caregiver stress, and lack of clarity regarding treatment decision making.

Conclusion: AML patients face substantial challenges regarding physical symptoms, psychological distress, and uncertainty regarding prognosis. These challenges signal needs for which palliative care in high-risk AML patients may help. Our findings highlight opportunities to develop targeted palliative care interventions addressing unmet needs in AML patients.

Keywords: Palliative care; acute myeloid leukemia; end-of-life care; leukemia; qualitative research.