ABSTRACT
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.
ABSTRACT
Background: The global COVID-19 pandemic has drastically disrupted cancer care, potentially exacerbating patients' distress levels. Patients with hematologic malignancies undergoing HSCT may be especially vulnerable to this pandemic stress given their well-documented heightened psychological distress and impaired quality of life (QOL). However, the association of the COVID-19 pandemic with distress and QOL is not well understood. Methods: We conducted a cross-sectional analysis of data from 205 patients with hematologic malignancies undergoing HSCT who were enrolled in a multisite, randomized supportive care trial. We compared baseline pre-HSCT distress (depression, anxiety, and posttraumatic stress disorder [PTSD] symptoms) and QOL between participants enrolled pre-COVID-19 (i.e., 03/2019-01/2020) and during the COVID-19 pandemic (i.e., 03/2020-01/2021). We used the Hospital Anxiety & Depression Scale, PTSD Checklist, and Functional Assessment of Cancer Therapy-Bone Marrow Transplant to assess symptoms of depression, anxiety, and PTSD, as well as QOL respectively. We used regression models adjusting for age, gender, race, relationship status, and cancer diagnosis to examine the relationship between the period of enrollment and patient-reported distress and QOL. Results: Prior to COVID-19, 124 participants enrolled, and 81 participants enrolled during the COVID-19 pandemic. The two cohorts had similar baseline demographic and disease risk factors. Most participants were non-Hispanic (n = 185;90.2%), White (n = 138;86.3%), and female (n = 131;64.5%) with a mean (SD) age of 54.9 (11.7) years. In multivariate regression models, enrollment during COVID-19 was not associated with pre-HSCT depression (B = 0.004;95% CI, -0.02 to 0.03;p = 0.73), anxiety (B = 0.008;95% CI, -0.01 to 0.03;p = 0.44), PTSD (B = 0.004;95% CI, -0.004 to 0.01;p = 0.35) symptoms or QOL (B = -0.003;95% CI, -0.02 to 0.01;p = 0.68). Conclusions: Contrary to the widespread notion that the COVID-19 pandemic has worsened distress in patients with cancer, we found no differences in pre-HSCT distress or QOL in patients with hematologic malignancies undergoing HSCT prior to or during the COVID19 pandemic. Our findings highlight the need to comprehensively explore the multifactorial causes (e.g., illness experience, treatment burden) of distress and QOL deficits in HSCT recipients irrespective of the COVID-19 pandemic.