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Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers

Author

Listed:
  • Rebecca Crawford

    (RTI Health Solutions)

  • Kate Sully

    (Adelphi Values Ltd)

  • Rebecca Conroy

    (RTI Health Solutions)

  • Chloe Johnson

    (Adelphi Values Ltd)

  • Lynda Doward

    (RTI Health Solutions)

  • Timothy Bell

    (Pfizer Inc)

  • Verna Welch

    (Pfizer Inc)

  • Francois Peloquin

    (Pfizer Canada Inc)

  • Adam Gater

    (Adelphi Values Ltd)

Abstract

Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood in adult patients with acute myeloid leukemia. This study analyzed combined findings from a targeted literature review with patient-reported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged ≥ 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria included patients (aged ≥ 60 years) with self-reported acute myeloid leukemia. In total, 26 articles (13 acute myeloid leukemia–specific and 14 other hematologic cancers, with one relevant to both populations) and 28 videos pertaining to ten unique patients/caregivers were identified. Key concepts reported by patients included the perceived value of survival for achieving personal and/or life milestones, the emotional/psychological distress of their diagnosis, and the uncertainties about life expectancy/prognosis. Effective therapies that could potentially delay progression and extend life were of great importance to patients; however, these were considered in terms of quality-of-life impact and disruption to daily life. Many patients expressed concerns regarding the lack of treatment options, the possibility of side effects, and how their diagnosis and treatment would affect relationships, daily lives, and ability to complete certain tasks. Both data sources yielded valuable and rich information on the patient experience and perceptions of hematologic cancers, in particular for acute myeloid leukemia, and its treatments. Further understanding of these insights could aid discussions between clinicians, patients, and their caregivers regarding treatment decisions, highlight outcomes of importance to patients in clinical studies, and ultimately, inform patient-focused drug development and evaluation.

Suggested Citation

  • Rebecca Crawford & Kate Sully & Rebecca Conroy & Chloe Johnson & Lynda Doward & Timothy Bell & Verna Welch & Francois Peloquin & Adam Gater, 2020. "Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(1), pages 83-102, February.
    • Handle: RePEc:spr:patien:v:13:y:2020:i:1:d:10.1007_s40271-019-00384-9
    DOI: 10.1007/s40271-019-00384-9
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    Cited by:

    1. Paula Lorgelly & Jack Pollard & Patricia Cubi-Molla & Amanda Cole & Duncan Sim & Jon Sussex, 2020. "Outcome-Based Payment Schemes: What Outcomes Do Patients with Cancer Value?," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(5), pages 599-610, October.

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