OBJECTIVE: About 40% of IgG4-related disease (IgG4-RD) patients face recurrence, severely impacting their quality of life. We aimed to explore the characteristics of the perception of recurrence risk in patients with IgG4-RD. METHODS: A qualitative study design with a descriptive phenomenological approach was used. Fourteen patients with IgG4-RD were recruited via purposive sampling, including six patients with first onset and eight patients experiencing recurrence. Semi-structured interviews were conducted to collect data, and transcripts were analysed by two independent researchers using Colaizzi's descriptive analysis framework. The COREQ checklist was followed. RESULTS: Data analysis identified nine subthemes falling into four themes: (a) perception of differential susceptibility to recurrence
(b) perception of crucial recurrence risk factors
(c) perception of recurrence warning signs and medical behaviours
(d) perception of multiple recurrence outcomes. We found that susceptibility perception formed the basis of recurrence risk perception. For patients with first onset, the main manifestations were misconception or evasion of the risk of recurrence, whereas patients experienced recurrence demonstrated a clear perception of recurrence risk and feelings of fear. Based on this, other themes emerged. CONCLUSIONS: Since the absence of accurate knowledge related to recurrence, the perception of recurrence risk in patients with IgG4-RD primarily manifested as misconception, evasion or feeling fear. Ultimately, they couldn't take appropriate actions to prevent recurrence. Healthcare professionals should develop comprehensive interventions for patients with IgG4-RD, integrating health education, disease consultation and psychological support, with the aim of enhancing awareness of recurrence risk and empowering them to manage their conditions in the long term.