Abstract

Abstract BACKGROUND Young patients diagnosed with gliomas face a life-changing disease, with a limited life length. They face challenges participating in daily social life and educational/work life. While the therapy for this patient group has the goal of prolonging life-length, little is known of their quality of life (QoL). A potential lower QoL due to diagnosis and the side effects of the treatment needs to be continuously assessed by health professionals. This study aimed to assess the QoL over time in young patients diagnosed with gliomas and to elucidate if these patients may need additional help and support. A second aim was to test the feasibility of repeated use of two validated online questionnaires to guide the clinicians working with this patient group. A third aim was to calculate a clinical cut-off score for the Functional Assessment of Cancer Treatment-Brain (FACT-Br). MATERIAL AND METHODS The design was a longitudinal, prospective study with a continuous inclusion during a 3-year period (2020-2023). Patients included were 18-35 years old suspected with a low-grade glioma at their first consultation in the clinic. The QoL was evaluated using FACT-Br and WHO-5 (WHO-5 Well-Being Index). The patients received the online questionnaires at pre-selected time points (pre-operation, 3-month, 6-month, 12-month) followed by a 3-month break and then repeated. The feasibility was evaluated in terms of compliance over time, defined as a completion of the first consecutive four questionnaires. A linear Generalized Estimating Equation (GEE) analysis was used to identify changes in FACT-Br total score. RESULTS A total of 33 patients were included in the study (Mdn=26y; 60% men; drop-out/exclusion n=3). At 3-month follow-up (n=30) four patients (13,3%) had a WHO-5 score below cut-off value (50/100 points) and five patients (16,7%) had a FACT-Br score below calculated cut-off (144/200 points) (M=160). The cut off-score for FACT-Br was calculated using a ROC-curve based on the WHO-5 cut-off value (n=30). The quality was deemed good (AUC=0,895). The Fact-Br total score showed no significant change over time (n=30). One subscale regarding functional wellbeing did show a significant change (p=0.021) (180 days change = 0,74; 95%-CI: 0,39-1,09). In March 2023 11 of 13 (84,6%) patients had a complete set of the first four consecutive questionnaires. CONCLUSION There was no significant change in the overall QoL (FACT-Br), but one subscale improved significantly. Five patients had a FACT-Br score below the calculated cut-off at 3 month-follow-up which might indicate a need for further support. Our study suggests that online QoL questionnaires are feasible in a clinical setup with this patient group. These results may give health professionals better insight in the need of support thus securing the best quality of life possible in young patients waiting for disease progression.

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