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Abstract Purpose To explore the self-perceived illness cognition and perception status, as well as the relevant factors among lymphangioleiomyomatosis (LAM) patients. Methods A web-based questionnaire survey was conducted in September 2023. A total of 121 LAM patients participated (including 16 patients with TSC-LAM), and the survey collected general demographic information, responses to a disease cognition questionnaire, and a simplified disease perception questionnaire. Results LAM patients have a higher level of negative illness cognition and a lower level of positive illness cognition, specifically characterized by helplessness (15.74 ± 4.68 points), acceptance (16.00 ± 3.28 points), and perceived benefits (16.92 ± 3.86 points). Single-factor analysis of variance found significant correlations between cultural level, age, family average monthly income, use of rapamycin, use of home oxygen therapy, hospitalization frequency, disease duration, severity of respiratory distress, activity limitation, and the helplessness score of LAM patients (p ≤ 0.05); the number of children was significantly associated with acceptance scores of LAM patients (p ≤ 0.05); and whether surgery had been performed was significantly associated with acceptance and perceived benefits scores of LAM patients (p ≤ 0.05). Disease duration and activity limitation entered the regression equation for helplessness dimension, while whether surgery had been performed entered the regression equation for perceived benefits dimension, but no factor entered the regression equation for acceptance dimension. Applying the same analysis to disease perception, we found that the average score of the Illness Perception Questionnaire was 45.43 ± 8.97, with lower scores in the reverse-scored items of individual control, treatment, and understanding. Conclusions LAM patients exhibit higher levels of helplessness, particularly among those with longer disease duration and greater activity limitations, leading to a more negative perception of the disease. Additionally, patients who have undergone surgical procedures tend to perceive fewer benefits. Furthermore, there is a significant correlation between illness perception and factors such as rapamycin usage, home oxygen therapy, disease duration and activity limitations caused by LAM. This indicates that clinical healthcare providers should pay more attention to LAM patients and their associated groups, providing both informational and psychological support. |
