It’s like living with a ticking time bomb—A qualitative study about patients’ and their families’ experiences related to the recurrence of a high-grade glioma

Background. High-grade gliomas (HGG) are the most aggressive and infiltrative subtype of primary brain tumors. The average survival rate from diagnosis is less than 2 years, and all patients eventually experience a recurrence. However, our understanding of patients’ and their families’ experiences and coping mechanisms concerning the inevitable recurrence remains limited.This qualitative study explored how patients with HGG and their close family members experience and cope with their fear of recurrence and the diagnosis of HGG recurrence. 

Methods. Semistructured individual interviews were conducted with patients with HGG and their family members. Following an inductive phenomenological hermeneutical approach, the interviews were coded, and the findings were divided into themes. 

Results. The study included 15 patients and 14 family members between the ages of 22 and 79. We identified 3 interrelated themes illustrating the complex experiences related to an HGG recurrence. Theme I, Navigating the fear of recurrence, describes experiences and coping mechanisms during the disease trajectory. Theme II, Facing reality and preparing for death and Theme III, Redefining hope in the era of recurrence, illustrate experiences related to the recurrence diagnosis and redefinition of hopes for the future. 

Conclusion. Fear of recurrence is prominent in patients with HGG and their families, and the recurrence diagnosis triggers thoughts about death and the end-of-life phase. This new knowledge can be used to tailor support to patients and family members during the disease trajectory and personalize advance care planning consultations.