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Experiences of treatment decision-making among older newly diagnosed adults with acute myeloid leukemia: a qualitative descriptive study

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Abstract

Purpose

Treatment decision-making for older adults with acute myeloid leukemia (AML) is complex and preference-sensitive. We sought to understand the patient experience of treatment decision-making to identify specific challenges in shared decision-making to improve clinical care and to inform the development of directed interventions.

Methods

We conducted in-depth interviews with newly diagnosed older (≥ 60 years) adults with AML and their caregivers following a semi-structured interview guide at a public safety net academic hospital. Interviews were digitally recorded, and qualitative thematic analysis was employed to synthesize findings.

Results

Eighteen in-depth interviews were conducted. Age ranged from 62 to 78 years. Patients received intermediate- (50%) or high-intensity (44%) chemotherapy or best supportive care only (6%). Six themes of patient experiences emerged from the analysis: patients (1) felt overwhelmed and in shock at diagnosis, (2) felt powerless to make decisions, (3) felt rushed and unprepared to make a treatment decision, (4) desired to follow oncologist recommendations for treatment, (5) balanced multiple competing factors during treatment decision-making, and (6) desired for ongoing engagement into their care planning. Patients reported many treatment outcomes that were important in treatment decision-making.

Conclusions

Older adults with newly diagnosed AML feel devastated and in shock at their diagnosis which appears to contribute to a feeling of being overwhelmed, unprepared, and rushed into treatment decisions. Because no one factor dominated treatment decision-making for all patients, the use of strategies to elicit individual patient preferences is critical to inform treatment decisions. Interventions are needed to reduce distress and increase a sense of participation in treatment decision-making.

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Funding

This study was funded by the Conquer Cancer—Harry F. Bisel, MD, Endowed Young Investigator Award from the American Society of Clinical Oncology (DRR). DRR was also supported by an award from the NIH/NCI, 1L30CA264755-01, during the time of the research.

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Authors and Affiliations

  1. UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA

    Daniel R. Richardson, Randall Teal, Ashley L. Bryant & William A. Wood

  2. University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Daniel R. Richardson, Carl J. Mhina, Amy C. Cole, Karthik Adapa, Ashley L. Bryant, Stephanie C. Wheeler & William A. Wood

  3. Duke University Department of Population Health Sciences, Durham, NC, USA

    Carl J. Mhina

  4. The Connected Health Applications and Interventions (CHAI) Core, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

    Randall Teal

  5. The Ohio State University, Columbus, OH, USA

    Norah Crossnohere & John F. P. Bridges

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  1. Daniel R. Richardson
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Contributions

Conception and design: DRR, RT, WAW. Data analysis: DRR, CJM, RT. Data review: DRR, CJM, RT. Manuscript preparation: All authors.

Corresponding author

Correspondence to Daniel R. Richardson.

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Ethical approval

This study was approved by the UNC Lineberger Comprehensive Cancer Center Protocol Review Committee and the University of North Carolina IRB.

Competing interests

The authors declare no competing interests.

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Richardson, D.R., Mhina, C.J., Teal, R. et al. Experiences of treatment decision-making among older newly diagnosed adults with acute myeloid leukemia: a qualitative descriptive study. Support Care Cancer 32, 197 (2024). https://doi.org/10.1007/s00520-024-08397-3

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