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Abstract
Abstract BACKGROUND Despite their more favorable prognosis, patients with isocitrate dehydrogenase (IDH)-mutant gliomas experience significant psychological distress across their disease trajectory. The specific drivers of distress in this population are poorly understood, and interventions to support these patients are lacking. We sought to better characterize drivers of distress and ways to enhance support for patients with IDH-mutant gliomas as they confront potentially prolonged but ultimately unpredictable survival with an incurable, progressive brain tumor. METHODS Eligible individuals were English-speaking adults ages 65 and younger diagnosed with an IDH-mutant glioma at a single academic medical center. We conducted semi-structured interviews (N=20) to better understand the distress patients experience as they progress along their illness trajectories. We audio-recorded and transcribed interviews and analyzed interview content using reflexive thematic analysis. RESULTS Distress among participating patients (female = 7/20; age <40 years = 10/20) was linked to their struggles to maintain a coherent sense of identity while adapting to 1) neurocognitive changes and 2) altered life plans amidst prognostic uncertainty. Patients described feeling self-conscious and distrustful of their cognitive capacities, frequently comparing their current performance to their premorbid functioning (e.g. by checking their symptoms and indexing perceived deficits against scan results). Patients felt overwhelmed by the need to make decisions and set priorities (e.g., regarding family planning, retirement) due to the uncertain timing of their tumor’s progression and its unclear impact on their future functioning. Patients identified the transition from treatment to surveillance as a time of heightened worry, as they shifted their focus from the logistics of cancer care to the task of planning – financially, occupationally, socially – for an uncertain future. CONCLUSION These findings highlight the need for tailored supportive care to help patients with IDH-mutant gliomas cope with the distress caused by significant changes to identity and ongoing uncertainties regarding their future.
Published Version
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