Abstract

Abstract BACKGROUND Due to new treatment regimes, an increasing proportion of patients with malignant brain tumors will likely be long-term survivors. To ensure optimal care for this patient group, it is crucial to conduct further research, including long-term follow-up of treatment-related symptoms, and distress. Patients with malignant brain tumors experiencing distressing symptoms will result in poorer overall survival and decreased quality of life. Despite this, the correlation between symptoms and distress in adults with malignant brain tumors undergoing proton beam therapy remains poorly understood. This study aimed to explore if symptoms and distress change over five years in adults with malignant brain tumors treated with proton beam therapy. An additional aim was to explore if symptoms and distress correlate. MATERIAL AND METHODS The study had a quantitative longitudinal multicenter design.Adult (≥18 years) patients (n = 149) with malignant brain tumors treated with proton beam therapy were followed over five years. The degree of symptom and distress were evaluated using the patient-reported Radiotherapy-Related Symptom Assessment Scale. Data from baseline, 1, 12-, and 60 months were analyzed using non-parametric tests. The correlation between symptoms and distress were analyzed using Spearman’s correlation. RESULTS Levels of symptoms and distress were generally low. Fatigue had the highest levels at all timepoints. Cognitive impairment increased significantly at 12-months (P=0.002) and was the most distressing symptom at 60-months follow-up. The results showed a significant, moderate to strong, correlation at all time points between symptoms and distress of fatigue, insomnia, pain, cognitive impairment, worry, anxiety, nausea, sadness, and skin reactions. CONCLUSION Our study highlights the correlation between symptoms and distress in adults with malignant brain tumors treated with proton beam therapy. Further, this study emphasizes that nursing should focus on what patients experience as the most distressing symptoms. Research should identify effective interventions to alleviate symptoms and reduce patient distress. Given the significant correlation between symptoms and distress in our study, we suggest developing cancer rehabilitation. Reduced levels of distressing symptoms would lead to a better quality of life and increased survival for this vulnerable group of patients.

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