BACKGROUND: Meningioma, the most prevalent brain tumor in adults, is predominantly benign and often treated with radiotherapy and/or surgery, generally with positive treatment outcomes. Radiotherapy can be administered using either conventional radiotherapy (CRT) or proton beam therapy (PBT). The treatment can cause chronic symptoms such as headache, fatigue, and neurocognitive impairments that can significantly affect daily life. However, there is a lack of research on the long-term consequences of treatment, particularly concerning patients' own experiences of related symptoms. Therefore, this study aimed to explore the experiences and daily life challenges of individuals at five or more years post-radiotherapy for meningioma.

METHODS: A qualitative interview study was conducted with 20 participants who were over five years post-treatment and had undergone either PBT or CRT. Using a structured guide with open questions, data were collected through online interviews which were then transcribed verbatim and analyzed using thematic analysis that followed a six-step process described by Braun and Clark.

RESULTS: Of the 20 participants, 17 had received PBT and 3 had undergone CRT, with most having completed their treatment more than six years ago. Two main themes were constructed: "Adjusted life circumstances" and "Reduced autonomy". Some participants described persistent symptoms such as chronic headaches, cognitive difficulties, and fatigue, which significantly affected their daily lives. Despite these challenges, some patients adapted through establishing new routines, accepting limitations, and altering their perspectives. Reduced autonomy was noted among some, who experienced increased dependence on family, feelings of isolation, and anxiety about tumor recurrence.

CONCLUSIONS: Some patients experience persistent symptoms and daily challenges even five or more years after radiotherapy for meningioma. Although some participants adapt by utilizing their own internal and external resources, this can lead to isolation and increased dependence on family and partners. Improving the follow-up care of these patients could help in optimize function and address their challenges.