Abstract Background Intracranial meningiomas are associated with substantial psychological morbidity. We aimed to characterize patients’ subjective experience of their disease trajectories. Methods We conducted an exploratory interview study. Ten adults with meningioma participated in semi-structured interviews 6 to 36 months post-diagnosis. Data were analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Results Patients consistently framed meningioma as a recurrent threat, with three temporal anchors: diagnosis, surgery, and long-term postoperative surveillance. Threat encompassed identity, daily functioning, and bodily trust, with persistent uncertainty. Coping strategies included humor, social connectedness, and structured rehabilitation, whereas avoidance and internet searching often amplified distress. Clinical conversations could reframe the threat and restore a sense of safety. Conclusions Intracranial meningioma is commonly experienced as a persistent, multifaceted threat. Care pathways should incorporate crisis-informed communication, expectation-setting regarding prognosis and surveillance, and distress triage using validated tools to align clinical care with lived experience and help prevent a smoldering crisis in patients and families.
Budde et al. (2026) studied this question.