Abstract
Abstract
BACKGROUND
Despite relatively favorable survival, patients with isocitrate dehydrogenase (IDH)-mutant gliomas often experience persistent distress and poor quality of life (QOL), driven in part by profound disruptions to their identity, relationships, and life roles. Given the lack of population-specific supportive care resources targeting these issues, we developed a patient-centered QOL intervention to address these challenges following an IDH-mutant glioma diagnosis.
DESIGN/METHODS
We interviewed adults aged 18-65 diagnosed with an IDH-mutant glioma (N=20) to explore their cancer-related experiences and supportive care preferences. Interviews were audio-recorded, transcribed, and coded. Using thematic analysis, we identified key themes from the coded data that informed the subsequent development of our intervention. We then engaged in an iterative process of design and refinement, collaborating closely with a multidisciplinary team of senior neuro-oncologists and psychologists to shape the intervention content and format.
RESULTS
Participants described persistent emotional challenges rooted in identity disruption. Key themes included: 1) negative comparisons to former roles and preferred selves, 2) the need to renegotiate social relationships, and 3) difficulty envisioning the future amidst ongoing existential uncertainty and concerns about neurocognitive decline and mortality. Informed by these findings, we developed NeuroTransitions, a six-session, one-on-one psychosocial intervention delivered by a behavioral health clinician. Sessions are guided by a patient-facing manual addressing topics such as illness identity, values clarification, goal setting, coping, managing uncertainty, and navigating changes in relationships. Through structured exercises, clinicians help patients reflect on how their illness has affected their pre-cancer identities, reinforce adaptive coping strategies, and support growth in meaningful identities and life paths.
CONCLUSION
NeuroTransitions represents a novel approach to improving QOL for patients with IDH-mutant gliomas by addressing the psychological and existential impact of illness on identity. We will refine the intervention and evaluate its feasibility and acceptability in a forthcoming open pilot study and subsequent randomized controlled trial.