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The impact of remission status on patients’ experiences with acute myeloid leukemia (AML): an exploratory analysis of longitudinal patient-reported outcomes data

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Abstract

Purpose

Shared decision-making in acute myeloid leukemia (AML) requires understanding patients’ longitudinal experiences of illness, but little is known about the impact of remission status on patient-reported outcomes (PROs). We aimed to explore the association between remission status and PROs 6–12 months following induction chemotherapy.

Methods

Forty-two patients completed three validated instruments characterizing symptom burden (Patient Care Monitor v2.0), distress (NCCN Distress Thermometer), and QOL (FACT-Leu), as part of a longitudinal observational study. We used regression models to explore the relationship between remission status and PROs, and explore differences by initial disease type (de novo versus secondary/relapsed AML).

Results

Those with secondary or relapsed AML at study onset had marked impairments in all measures compared to de novo AML patients. After 6 months, their mean distress score was 4.8 (> 4.0 warrants intervention), they reported a mean of 14.1 moderate/severe symptoms and had a mean QOL score of 113.6, compared to 1.0, 1.7, and 155.2, respectively, for those with de novo AML (p < .0001). Similarly, patients in relapse had a mean distress score of 5.3, a mean of 12.8 moderate/severe symptoms, and a mean QOL score of 113.4, compared to 1.8, 5.7, and 143.8, respectively, among those in remission (p < .005). These patterns persisted after adjusting for baseline differences (p < .0001).

Conclusion

Remission is associated with markedly better patient well-being in AML. Patients with secondary or relapsed AML face more severe symptom burden, distress, and QOL issues after induction. Interventions are needed to improve AML patients’ experiences of illness.

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Funding

This research was supported by a Junior Career Development Award to Dr. LeBlanc from the National Palliative Care Research Center, and a Sojourns Scholars Award to Dr. LeBlanc from the Cambia Health Foundation. Dr. LeBlanc’s research is currently supported by the American Cancer Society (grant number 128776-MRSG-15-185-01-PCSM). Mr. Wolf is supported by the National Institutes of Health funding for the Duke Biostatistics Core (grant number UL1TR001117)

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Authors and Affiliations

  1. Duke University School of Medicine, Box: DUMC 2927, Durham, NC, 27703, USA

    Neha Kayastha & Thomas W. LeBlanc

  2. Duke Cancer Institute, Box: DUMC 2715, Durham, NC, 27710, USA

    Steven P. Wolf, Susan C. Locke, Gregory P. Samsa & Thomas W. LeBlanc

  3. Department of Biostatistics and Bioinformatics, Duke University Medical Center, 2424 Erwin Road, Suite 1102 Hock Plaza Box 2721, Durham, NC, 27710, USA

    Steven P. Wolf & Gregory P. Samsa

  4. Department of Hematology and Oncology, Massachusetts General Hospital, 55 Fruit Street, Yawkey 9E, Boston, MA, 02114, USA

    Areej El-Jawahri

  5. Duke University School of Medicine, Box 2715, DUMC, Durham, NC, 27710, USA

    Thomas W. LeBlanc

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  1. Neha Kayastha
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Correspondence to Thomas W. LeBlanc.

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The Institutional Review Board of the Duke University School of Medicine approved this protocol. Informed consent was obtained from all individual participants included in the study.

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The authors declare that they have no relevant conflicts of interest.

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Kayastha, N., Wolf, S.P., Locke, S.C. et al. The impact of remission status on patients’ experiences with acute myeloid leukemia (AML): an exploratory analysis of longitudinal patient-reported outcomes data. Support Care Cancer 26, 1437–1445 (2018). https://doi.org/10.1007/s00520-017-3973-4

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  • DOI: https://doi.org/10.1007/s00520-017-3973-4

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