“Am I ever going to find myself again?”: Identity destabilization in patients with isocitrate dehydrogenase-mutant gliomas

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Abstract Background Patients with isocitrate dehydrogenase (IDH)-mutant gliomas often experience prolonged survival but frequently have persistent psychological distress and impaired quality of life (QOL). While prior research has characterized symptomatology and functional outcomes, less is known about how factors such as age and developmental stage shape distress and coping in this population. Our study sought to better understand these psychosocial dimensions of living with an IDH-mutant glioma, to inform the design of tailored supportive care. Methods We conducted semistructured interviews with adults aged 18-65 years diagnosed with IDH-mutant gliomas (n = 20) receiving care at a large academic medical center. We used stratified purposeful sampling to ensure variation in age. Our multidisciplinary team coded and analyzed interview transcripts using reflexive thematic analysis. Results Participants’ experiences coalesced around a central concept of destabilized identity, reflected in 5 interrelated themes: (1) yearning for an idealized past self; (2) shifting social roles; (3) existential uncertainty; (4) informational uncertainty; and (5) diverse emotional responses to identity conflict. Participants reported a loss of continuity with their premorbid selves, uncertainty about the future, and worries about sustaining cognitive and social functioning. This identity disruption was particularly distressing for younger adults navigating careers, relationships, and long-term life planning. Many expressed unmet support needs despite ongoing oncologic care. Conclusions Disruption of personal identity emerged as a central feature of the experience of living with an IDH-mutant glioma. Supportive care that acknowledges and helps patients adapt to changes in their sense of self may improve overall psychosocial well-being and QOL.

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