“Aiming at a moving target”—The daily life experiences of adolescents and young adults with a low-grade glioma

Abstract

Abstract Background Low-grade gliomas (LGG) are among the most frequently occurring tumors in adolescent and young adult (AYA) patients (aged 18–39 years old at primary diagnosis). These tumors have a variable prognosis, presenting challenges for patients in shaping their future. This study aimed to identify the age-specific experiences and needs of AYA patients with LGG in their daily lives. Methods In-depth interviews were conducted with AYA patients diagnosed with LGG. Thematic analysis was performed to derive the age-specific codes, looking for overarching themes and sub-themes. Results Sixteen patients participated in this study. The cognitive symptoms of the disease (including difficulty concentrating, memory issues, and speech problems) are invisible to others but caused significant disruptions in many domains that were particularly important to AYA patients (eg, employment, family life, and autonomy). Additionally, the uncertainty regarding their life expectancy led to difficulties in making decisions about the future. They also perceived a lack of control over their future and the time they had left. Conclusions LGG have a significant impact on AYA patients. However, this impact is not fully understood by others close to them. The results highlight the importance of providing these patients with appropriate peer support, interventions tailored to both their disease and life phase, utilizing a multidisciplinary approach, and maintaining a focus on long-term support for these patients. It is crucial to provide AYA care for these patients within the neurology department, as LGG involve both tumor- and age-specific problems.