Experiences of being diagnosed with unruptured intracranial aneurysm in a population-based health survey: A qualitative interview study.

Abstract

Introduction: Most unruptured intracranial aneurysms (UIA) are small and carry a low rupture risk. Many patients are therefore not treated with occlusion but managed conservatively. Evidence on the psychological impact of living with an untreated UIA is limited and conflicting.

Research question: To explore experiences of receiving a diagnosis of a UIA and having to live with it over time.

Material and methods: The Tromsø7 health survey examined 1862 participants with magnetic resonance angiography and 85 diagnosed with conservatively managed UIAs were eligible for inclusion. We invited 24 based on purposive maximum-variation sampling according to age, sex, and aneurysm size, and 18 consented. Twelve participated in semi-structured interviews before data saturation was achieved. We excluded two because the interviews revealed exclusion criteria (cognitive impairment and treated aneurysm). Data from 10 interviews conducted median eight years after diagnosis were included in a thematic analysis.

Results: In retrospective narratives, many participants recalled experiencing serious worry or fear shortly after the diagnosis. Most described a subsequent process of adaption to the uncertainty through trust in clinicians, resilience, normalization and meaning-making, which enabled them to reestablish normality in everyday life. Concerns could resurface around follow-ups. Few described persistent anxiety at the time of the interview. The diagnosis motivated healthy lifestyle changes for many.

Discussion and conclusion: The interviews revealed substantial psychosocial impacts of having to live with untreated UIAs. We suggest these insights could inform decision-making in contexts where clinicians and patients must balance the potential benefits and burdens of imaging and surveillance.