Examining symptom burden and the palliative care needs of patients with hematologic malignancies
Date
2024
Authors
Booker, Reanne
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Abstract
Despite the proven benefits of integration of palliative care in oncology, it has been well established that patients with hematologic malignancies and those undergoing hematopoietic stem cell transplantation do not routinely receive timely palliative care. Patients with hematologic malignancies are less likely to receive palliative care and more likely to receive aggressive care at end-of- life (such as chemotherapy, admission to hospital, and admission to an intensive care unit) compared to patients with solid tumours. Advances in the understanding and treatment of hematologic malignancies has led to improved survival rates for some patients, but high mortality rates and diminished quality of life for patients who survive persist.
This dissertation includes three studies that are presented in paper-based format. The first paper (Chapter 4) describes the qualitative study that was undertaken to examine the perspective of patients (n=8), family caregivers (n=4), and clinicians (n=16) on integrating palliative care for patients with hematologic malignancies undergoing hematopoietic stem cell transplantation. Findings from this study revealed that patients undergoing hematopoietic stem cell transplant experience an array of physical, psychosocial, and practical concerns, during and after hematopoietic stem cell transplantation. In addition, participants spoke of the unique challenges to integrating palliative care in this population, such as prognostic uncertainty, the curative-intent focus, and misperceptions of palliative care held by clinicians, patients, and family caregivers alike.
The second paper is the protocol for a randomized clinical trial to examine the impact of early palliative care compared to standard care for patients with hematologic malignancies. The study was developed following the completion of the qualitative study, taking into consideration patient, family caregiver, and clinician input on how to best integrate palliative care in this population. Due to the COVID-19 pandemic, there was a delay in opening the trial and there have been subsequent challenges with recruitment. As such, the findings from this study are not presented in this dissertation as the study is ongoing.
The third paper describes a retrospective observational cohort study that examined symptom burden and healthcare utilization in patients with hematologic malignancies (N=7080). This study also involved chart audits of patients who had died within a year of completing symptom questionnaires (n=432) to examine symptom burden and healthcare utilization in this sub-cohort. This study found that patients with hematologic malignancies experience high symptom burden, particularly in the last year of life. In addition, symptom profiles were found to be associated with sociodemographic and clinical variables. In particular, females reported more frequent and severe symptoms compared to males and older adults reported moderate to severe physical symptoms but less frequent and less severe psychological symptoms compared to younger patients. This study also found that symptoms were associated with increased healthcare utilization, particularly emergency department visits. The findings emphasize the need for more supports for patients, particularly for symptom management.
In summary, symptom burden and treatment-related toxicities are known to be high in patients with HMs. Morbidity and mortality associated with HMs and their treatment continue to be high. This research adds to the literature by demonstrating that patients with hematologic malignancies experience high symptom burden, experience high rates of healthcare utilization, and could benefit from integration of palliative care. This research informs implications for clinical practice, education, research, and policy, including better symptom management, education on the potential benefits of palliative care for patients with hematologic malignancies, the need for research on when and how to best integrate palliative care in this population, and consideration of policy changes to remove restrictive criteria in palliative care and hospice that may be barriers for patients with hematologic malignancies. Preliminary findings from this research have already been shared at local, provincial, national, and international levels. Resources on symptom management and palliative care for patients with hematologic malignancies have been developed with patient support societies across Canada. As such, it is hoped that this research will contribute to improving the patient and family caregiver experience and quality of life after the diagnosis of a hematologic malignancy.
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Keywords
hematologic malignancies, palliative care, quality of life, symptoms