| Objective To explore the status quo and relevant factors of mental resilience in rare disease patients, and provide theoretical basis for improving mental resilience in rare disease patients. Methods A cross-sectional survey was conducted in Anhui Province from January to April 2025. Using snowball sampling, questionnaires were distributed to rare disease patients in multiple hospitals in Anhui Province. Non-parametric tests, correlation analysis, and multiple linear regression analysis were performed to identify relevant factors.. Results A total of 387 questionnaires were sent out and 361 valid questionnaires were recovered, the effective recovery rate was 93.3%. Single factor analysis showed that there were significant differences in psychological elasticity among rare disease groups with different BMI, education level, occupation status, religious belief, family annual income, treatment stage, comorbidity and social insurance number (P < 0.05). Correlation analysis showed that psychological resilience was positively correlated with social support and family resilience (r = 0.388、0.632；P < 0.001). Multiple linear regression analysis showed that social support, family flexibility and treatment stage were the relevant factors of psychological flexibility in patients with rare diseases (P < 0.05). Conclusion The psychological resilience of patients with rare diseases is related to multiple factors. Social support and family resilience have a positive correlation, while the treatment stage has a negative correlation. In the intervention and treatment of rare disease patients, we should pay attention to these factors, strengthen the construction of social support system, improve family elasticity and formulate individualized intervention strategies according to the psychological characteristics of patients at different treatment stages, so as to enhance the psychological elasticity of rare disease patients, improve their mental health status and improve their quality of life. |
