Current status and influencing factors of fear disease progression in Chinese primary brain tumor patients: A mixed methods study

Abstract

Objective

In this study, we investigated the fear of disease progression in Chinese PBT patients and examined the correlation between sociodemographic, clinical, and psychological variables of patients with the fear of progression (FoP). Additionally, the study also evaluated the subjective experience of FoP in patients with primary brain tumors (PBT).

Methods

A mixed-methods study was conducted between March 2022 and December 2023, consisting of two phases: a quantitative approach in phase I, and a qualitative approach in phase II. In phase I, 305 patients with PBT filled in several questionnaires. An analysis was performed to identify potential predictors associated with FoP. In phase II, semi-structured interviews were conducted with 16 participants whose FoP scores were ≥ 34 in phase I to obtain information on their personal experiences with FoP.

Results

The results of the quantitative study showed that 192 (63 %) patients experienced high levels of FoP. The mean score of fear of progression was (34.02±6.78). Young age, high disease uncertainty, low social support, high negative coping and low positive coping are important factors affecting FoP in PBT patients. Qualitative research focused on three themes: triggers, coping styles, and the help needed.

Conclusion

Enhanced screening and assessment of FoP is essential to identify dysfunctionin PBT. Meanwhile, the implications of these predictors for enhanced healthcare professional education and patient self-management may help healthcare providers implement relevant interventions promptly and help patients reduce their FoP. However, due to limitations such as sample, reporting bias, and specific mechanisms between predictors and FOPs that have not yet been explored in depth, further exploration is needed in the future.