From diagnosis to daily realities: longitudinal phenomenological exploration of symptom trajectories in glioma survivorship

Abstract Background With the continuous improvement of global cancer survival rates, the long-term quality of life among cancer survivors has attracted increasing attention. Glioma is a common primary malignant tumor of the central nervous system. Both the disease itself and anti-tumor therapies induce a variety of dynamically fluctuating symptoms throughout the disease course, which impose persistent physical and psychological impairments and substantially compromise patients’ quality of life. Current qualitative studies have only preliminarily explored symptom-related issues in patients with glioma, lacking longitudinal analyses regarding the dynamic evolution of patients’ symptom perceptions, coping strategies, and care demands. Accordingly, this study adopts a longitudinal phenomenological approach to address the gaps in existing evidence. Aims This longitudinal qualitative study aims to conduct a phenomenological exploration of the symptom trajectories in glioma survivorship, specifically focusing on the evolving processes of symptom recognition, the diversity of long-term coping strategies, the clinical challenges in symptom modulation, and the resultant needs for a structured intervention framework. Methods Based on the phenomenological approach, semi-structured interviews were implemented among 12 glioma survivors at three time points (T1, initial diagnosis; T2, 1 month after surgery; T3, 3 months after surgery). Colaizzi’s method was used to analyze interview transcripts and extract the essential themes of patients’ long-term survivorship experience. Results The following four themes and associated categories were identified: (1) self-perception and interpretation of the disease, (2) differentiated coping with symptoms, (3) practical dilemmas in symptom management, (4) core needs in symptom management. Conclusion The symptom journey for glioma survivors is not static but a complex trajectory marked by significant and evolving burdens. Our findings, extending from our earlier research, underscore the critical need for healthcare systems to move beyond episodic care. Future efforts must focus on developing longitudinal, patient-centered intervention frameworks that address the unmet needs across the survivorship continuum, thereby effectively reducing symptom burden and enhancing quality of life.