Uncertainty about the future: Insights from older patients with acute myeloid leukaemia (aml) on different treatment paths
Authors: R. B. Walter, D. Maze, D. Merinovega, T. J. Bell, J. Stein, K. Amer, L. Morgan, F. Peloquin, L. Hernandez-Aldama, J. Healy, C. Panter, V. Welch, A. Gater, R. Hohman, L. O'Hara, A. Brown, T. W. Leblanc, N. H. Russell
Journal: HemaSphere (2021)

Background: AML is a haematologic cancer primarily affecting older people (median age 68 at diagnosis). Prognosis is poor, with median survival ranging from 2 to 10 months from diagnosis, depending on patient health, age, and treatment path. Some patients described struggling with uncertainty about the future, but it is unclear how this differs across patients and treatment paths. Aims: This study explored the experiences of AML patients (≥65 years old, not receiving intensive chemotherapy), their close relatives, and independent clinicians. Specifically, patient expectations for the future and how these varied by treatment path and by time since diagnosis were investigated. Methods: A total of 28 AML patients (aged 65-83;median 74), 25 relatives, and 10 clinicians from the US, UK, and Canada each took part in a 60-minute, semi-structured telephone interview. Open-ended questions were used to elicit spontaneous content, followed by focused questions when needed. Results: Patients had diverse treatment histories: 13 no treatment, 14 with experience of non-intensive chemotherapy (NIC) including 3 who discontinued treatment, and 1 on best supportive care (BSC). At time of interview the mean time since diagnosis was 5 (range 2 to 9) months for patients with no treatment experience, and 8 (range 2 to 19) months for those with treatment experience. The BSC patient was diagnosed 9 months prior to interview. Patients discussed positive and negative expectations for the future related to: physical functioning;treatment;life expectancy;ability to do hobbies, spend time with family, and go on vacation. In the no treatment group, there was evidence that expectations about the future became more negative over time. Few patients (n=4/13) recalled having negative expectations about the future at diagnosis, while most (n=10/13) did at time of interview. In contrast, patients with treatment experience appeared to have increasingly positive expectations. Most of these patients (n=11/14) recalled negative expectations when diagnosed, whereas at interview most (n=9/14) felt hopeful about future events. Further, of patients with treatment experience, almost all those diagnosed ≥6 months prior to interview had positive expectations about their future (n=6/7), while under half of those diagnosed <6 months prior (n=3/7) did. Clinicians (n=7/10) further highlighted that patient expectations changed over time depending on treatment success. Additionally, patients (n=15/28) and relatives (n=15/25) discussed feeling uncertain throughout the AML journey, reporting unknowns around life expectancy, what they would be able to accomplish, and future plans. Uncertainty was a consistent experience regardless of treatment history, with similar proportions of patients not on treatment (n=7/13) and those with NIC experience (n=7/14) reporting the sentiment. Additionally, recently interviewed patients (n=7/13) and relatives (n=7/10) noted that the ongoing COVID-19 pandemic contributed to experiences of uncertainty and difficulties planning for the future. Summary/Conclusion: There were key differences between patients not on treatment and those with experience of NIC, as patients with treatment experience demonstrated more hope for the future. Regardless, uncertainty is a key element of the AML journey. For some patients, this was exacerbated by the COVID-19 pandemic. These findings highlight the importance of ensuring all patients are provided with emotional and spiritual support to help them process their diagnosis and plan for the future, both during this pandemic and beyond.