Acute Leukemia Patients’ Unmet Needs: Qualitative Findings and Suggested Opportunities for Early Palliative Care (SA527A)

  • Boucher N
  • Johnson K
  • LeBlanc T
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Abstract

Objectives • Explain 5 challenges experienced by patients with AML. • Describe 5 ways that early palliative care could positively impact care for patients with AML. Original Research Background. Patients with acute leukemias likely have unmet palliative care needs, yet little is known about the specific challenges they face, particularly during active treatment. Early concurrent palliative care with standard oncology care could help meet patients' needs regarding symptom management, social support, prognostic understanding, psychological distress, and care goals. Research Objectives. We examined acute myeloid leukemia (AML) patients' expressed challenges, support sources, and mortality perceptions after intensive induction chemotherapy. We aimed to understand opportunities for palliative care interventions for AML patients. Methods. This was a qualitative study of AML patients with high-risk disease at Duke University Hospital, Durham, NC. Multiple coders used descriptive content analysis to identify common and recurrent themes. Results. We analyzed interview transcripts of 22 patients. Sample demographics included: 10 (45.5%) females, 12 (54.5%) males, mean age = 62 (SD 10.9), 19 (86.4%) non-Hispanic white, and 3 (13.6%) non-white/non-Hispanic. All had high-risk disease, either by age, relapse status, or molecular markers. Patients identified challenges in 5 key domains: physical symptoms, psychological issues, care coordination, uncertainty, and end-of-life care. Specific challenges included feelings of helplessness/hopelessness, activity restriction, fatigue, fevers, caregiver stress, geographic distance to care, and confusion about next steps in treatment/non-treatment. Sources of supports included hope, resilience, families'/friends' devotion, caregivers, scripture, and positive attitude. Interviewees reported relying on these supports to negotiate physical distress, psychological distress, and prognostic uncertainty. Perceptions related to mortality included death/dying acceptance, processes of saying goodbye to loved ones, and outlook incongruent with prognosis. Interviewees frequently reported poor communication/coordination by their care team, including treatment plan uncertainty. Conclusion. AML patients face substantial challenges regarding symptoms, psychological distress, care coordination, uncertainty, and end-of-life care. These challenges signal unmet palliative care needs in high-risk AML patients. Implications for research, policy, or practice. These findings highlight opportunities to develop targeted palliative care interventions addressing symptom management, social support, prognostic understanding, psychological distress, and communication in AML patients.

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APA

Boucher, N., Johnson, K., & LeBlanc, T. (2017). Acute Leukemia Patients’ Unmet Needs: Qualitative Findings and Suggested Opportunities for Early Palliative Care (SA527A). Journal of Pain and Symptom Management, 53(2), 407–408. https://doi.org/10.1016/j.jpainsymman.2016.12.206

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