Malignant brain tumor diagnosis in Manitoba: understanding patient and caregiver perspectives
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Date
2019
Authors
Stromecki, Margaret
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Abstract
Introduction: About 55,000 Canadians are living with a brain tumor today (1). Brain tumor
diagnoses are preceded by the onset of headaches, nausea, vomiting, and/or seizures (2).
Malignant brain tumors have a poor prognosis and are frequently associated with neurocognitive
deficits. Within the first eight months after a new malignant brain tumor diagnosis, 15-20% of
patients develop a depressive disorder (3,4). The capability of patients to cope and understand a
brain tumor diagnosis is dependent on several factors, including their physical, cognitive and
psychosocial health (5,6). In this study, we sought to determine which factors contribute to
newly diagnosed malignant brain tumor patient and caregiver needs after diagnosis. Methods:
We conducted semi-structured interviews with two newly diagnosed malignant brain tumor
patients and their caregivers to qualitatively explore both the patient and caregivers’ perspective
about the diagnosis before and after tumor resection at the Health Sciences Centre (HSC). The
software program NVivo was used to help analyze and code central themes within the
interviews. Results: Our findings resulted in 3 central themes: (1) Information preferences in
newly diagnosed malignant brain tumor patients vs. caregivers, (2) Patients managing family,
changing quality of life, and healthcare provider visits, and (3) Caregiver responsibility. Our
results demonstrated that patients and caregivers differ in their care needs and wants during the
diagnostic phase of a malignant brain tumor. Conclusions: These interviews show how complex
patient and caregiver needs are how difficult they can be to address with a new brain tumor
diagnosis. For both newly diagnosed malignant brain tumor patients and caregivers, quality of
life changes dramatically. Screening models aimed at identifying patient and caregiver needs
would be helpful to ensure better health-related quality of life (HR-QoL) in brain tumor patients
and their caregivers.
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Keywords
Brain tumor